The FastDay Forum

Some might just sigh and think "heck can't that woman remember anything?" and no, she can't - the memory is very short.
Back from the doctors app and the new blood sample showed a level of 0.14 (of whatever measurement) so it's better than the 0.02 before, a bit better. So - the doc lowered the does from 125 to 100 of levaxin and I went
Well GP of today don't have that much time, so I didn't ask but how come you treat a low level of hormone with less synthetic one? I do wonder if the doc knew what he was talking about, cause he asked if I had symptoms that I connect with hyperthyroid (like if I had lost weight - hahaha) but from what I have read I think I have hypothyroidism. Must confess that I'm quite
Otherwise it's quite sunny and warmish here today and on Thursday I'm going to drive down to Norrköping to fetch my oldest son Sam, who will leave for a 3 week work practice in South Africa on Saturday evening. Oh my, my poor Mama heart....

Hmmm Wolfie ..thyroid readings ARE confusing and different labs have different ranges they use..
We need our @Tracieknits expertise for this query..
I THINK that the reading you quoted referred to your T4 level rather than to TSH level (which is the other one they test)
T4... If it is HIGHER than the last reading,its good news as it shows the thyroid is struggling less and working better,hence why yr doc has lowered yr thyroxine dose
( TSH works the other way,if it LOWERS it shows the thyroid is struggling less)
I think if you're on thyroid meds you must be hypo ( underactive) rather than hyper ( overactive) so i too feel a bit baffled by the doctor's question..we need Tracie !
Ps feel for you re Sam going away..but it will be good for him..and he' ll be home in 3 weeks full of tales to tell! X

Hmmm Wolfie ..thyroid readings ARE confusing and different labs have different ranges they use..
We need our @Tracieknits expertise for this query..
I THINK that the reading you quoted referred to your T4 level rather than to TSH level (which is the other one they test)
T4... If it is HIGHER than the last reading,its good news as it shows the thyroid is struggling less and working better,hence why yr doc has lowered yr thyroxine dose
( TSH works the other way,if it LOWERS it shows the thyroid is struggling less)
I think if you're on thyroid meds you must be hypo ( underactive) rather than hyper ( overactive) so i too feel a bit baffled by the doctor's question..we need Tracie !
Ps feel for you re Sam going away..but it will be good for him..and he' ll be home in 3 weeks full of tales to tell! X

I know I come a cross as very confusing, but it is the TSH levels that are that low. I have read and read again and then some and still don't get it at all. Have my hope up that someone can explain it better that all them articles I have read on the web.
PS- Sam will have the time of his life (he have even had riding lessons for some weeks now) at that Dream Horse Safari place and he have promised to keep in touch over the weeks. Oh my, why didn't we have that chance when we where young?

Hi @Wolfie no worries, I often come away from medic appointments with more questions because they are not clear about the message they wish to share - often that is a double message and it takes time to process any misunderstanding. It happened this month with my Dad and the consultants/registras - always feel able to go back or pick up the phone and ask them for clarity. It's your right. Meanwhile, I'm sure Tracie will be here soon to assist. My DD spent 3 weeks in SA at Xmas, great experience and I'm sure Sam will too.

[Tracieknits]

Hi - makes perfect sense that the doc would lower your meds if TSH is coming down. Hopefully they are getting your levels once a month

[Tracieknits]

I'm sorry but I won't be around this week - I'm visiting my husband's family in Nebraska because his uncle has cancer

@Wolfie I have had an under active thyroid for a long time and it is a bit of a minefield. If your TSH is low it means your thyroid hormone is high and is suppressing the TSH so that is why your doctor has reduced your medication. For a long time i used to feel I was hypo when my blood tests were normal or showed me to be over treated. A few years ago I saw an endocrinologist and at my request was started on a combination of T3 and T4 and very quickly started to feel 'normal' My blood tests also became more normal although my TSH tends to be a bit on the low side. Luckily my GP does not worry about this if my T4 is well within the normal range. I have done a bit of reading about this and it seems that some patients do not convert T4 to T3 . This website is useful: http://www.thyroiduk.org.uk/tuk/testing ... tests.html and this information from the 'Getting a diagnosis ' section may be relevant :
However, there has been recent evidence to show that it may be safe for patients taking long-term thyroxine replacement therapy to have a low but not suppressed TSH level. The patients who took part in the study who had very high (more than 4.0mU/l) or suppressed (less than 0.03mU/l) TSH levels more frequently suffered from heart disease, abnormal heartbeat patterns and bone fractures compared to patients with TSH levels in the normal range (0.4-4.0). Patients who had a slightly low TSH level (0.04 – 0.4mU/l) did not have an increased risk of contracting any of these conditions.

Take the booklet and details of the above study to your next appointment with your doctor and discuss the possibility of a further increase of levothyroxine. If you experience signs of over-replacement such as feeling very hot and sweaty, have a tremor and fast heartbeat, you should contact your doctor as soon as possible to discuss going back to your previous dosage.
Some people do not convert their thyroxine adequately into T3. This could be due to lack of certain vitamins and minerals or possibly due to a faulty gene. The DIO2 gene was researched in 2009 and the results were published in the paper entitled, "Common Variation in the DIO2 Gene Predicts Baseline Psychological Well-Being and Response to Combination Thyroxine Plus Triiodothyronine Therapy in Hypothyroid Patients" by V Panicker, P Saravanan, B Vaidya, J Evans, A Hattersley, T Frayling & C Dayan - jcem.endojournals.org/content/94/5/1623.full.pdf+html

The researchers found that patients on levothyroxine (T4) alone felt worse if the faulty DIO2 gene was inherited through one parent and worse still if they inherited the faulty gene from both parents.

The patients on this study were given T4 only for a set period and then combination treatment of both T4 and T3. The patients who had normal genes did not feel any different on combination treatment. However, those who had one faulty gene felt better on the combination treatment and those with both faulty genes felt better still.

This means that there is a possibility that patients who are on levothyroxine alone and still have symptoms may improve with the addition of T3.

Because this faulty gene causes a deficiency of T3 within the cells, the usual thyroid hormone function tests will not show up a problem. This means that your TSH, FT4 and FT3 blood tests will look normal.

The researchers concluded, “Our results require replication but suggest that commonly inherited variation in the DIO2 gene is associated both with impaired baseline psychological well-being on T4 and enhanced response to combination T4/T3 therapy, but did not affect serum thyroid hormone levels.” This means that some people do not convert but this doesn’t show in their blood tests.

Thyroid UK is now working with a laboratory that does this test – Regenerus Laboratories Ltd. For more information on the DIO2 test and how to get tested click here click here

Good luck with getting things sorted out - going armed with some of this information might help and I would definitely ask your doctor if he would consider trying some T3 - it is more expensive that T4 which can be an issue.

Lil - thanks for for that impressive amount of information. Can't take it all in at once (am so feeble brained right now ), but they checked both the T3 and T4 which was within the normal range.
GPs here is more often than not doctors that didn't have it in them to become specialists in other fields. I have had one good and caring, the rest is...well they lack in some counts. My thyroid problems are drug related. Drug as in medicine that is LOL.
I do hope and somewhat pray (not my strongest point) that the change in levaxin dose will help - quickly! I can manage the first half of the day but as the day passes, the sense of overwhelming tiredness sets it. I will need a lot of ice cold coke tomorrow afternoon

@Wolfie the symptoms you describe do sound more like under that over activity of your thyroid so reducing your medication would be counterproductive. What some of the information i posted indicates is that your blood levels can be normal even if you are hypothyroid if you are genetically disposed. Hopefully you will start to feel better but if not you need to see your doctor again. I seem to remember ( not sure where from ) that you have a lowish BMI so this may not apply to you

@lil thanks for all that helpful info
A lot to take in and i get VERY confused over anything thyroid related..and i think my GP isnt very clued up either
Did you have to pay to see an endocrinologist? I guess they have more knowledge than the GPS.
Ps @Wolfie and @Tracieknitssorry, i thought the figures referred to T4 ..
i looked at the numbers wrongly ( read them as 2 and 14 rather than 0.2 and 0.14 ) Dopey!
@tracieknits best wishes to yr uncle and yourself and hub xx hope all will be ok..safe journey xx

@CandiceMarie I had been pestering my GP to raise my medication for some time. I definitely feel that the blood tests don't tell the whole story. In the past I had increased my medication off my own bat then confessed at which point my blood tests remained normal despite the increased dose. I then heard of someone who had been struggling with their thyroid for ages who had started taking one of the natural thyroid preparations ( these are made of pigs thyroid gland and contain several different hormones that occur naturally) and had had a great result. So I told my GP that I would like to be referred to see an endocrinologist to consider it. As it happens the endocrinologist did not use those products and was just as fixated on the blood tests as the GP. After a few visits I said I didn't feel it was particularly useful going to the clinic and had hoped to try something different like T3 . She said I could try it but I had to get it through my GP - so it would be on their budget I suppose. I really never looked back. I didn't lose any significant weight but I felt so much better - alert again. My GP has continued to prescribe it on the NHS but I would pay for it if I had to . I now usually see a different ( younger) GP who has a much more relaxed approach to the blood tests as I said before.
The information I found when I was looking for stuff for Wolfie sort of explains how I can feel so much better when my blood tests are no different from when I was feeling awful. Neither of my parents had a thyroid problem but they both had siblings who did so maybe I have inherited the faulty gene.

Thanks @lil the T3 seems to be crucial.When i look online it always says that in the UK, the tests dont take it into account sufficiently or not at all..There just seems to be endless confusion and misunderstanding even amongst the medics
...what a shame that the endo guy wasnt much use....Good for you taking the bull by the horns - good job you can assert yrself
I have ME ( Myalgic Encephalitis) which i think accounts for a lot of my fatigue and brain fog,but it could also be because i' m not on enough thyroxine
At the moment i' m trying a medication for ME that is unlicensed so i pay for that myself..once i get sorted with that, i think i' ll see my GP re endo appt.
My family history is of overactive thyroid rather than under..my gran died of it aged 52.. They really didnt have treatment back then i suppose and it affected her heart very badly..my Mum had a big op when i was a little kid to remove some of her thyroid..but by the time they operated,she too had heart problems x

[carorees]

To add another thing into the mix, I read that obesity can affect T4 to T3 conversion. And then there's reverse T3 to consider.

I've written about fasting and thyroid disease plus a primer on thyroid hormones in the fasting library https://www.fastday.com/fasting/intermi ... disorders/

I!ve also been battling idiot GPs who have no knowledge if thyroid in 21st century, I have been lucky in the past to have 3 fantastic ones who specialise in hormones in their GP practices, however they are not available to me now. these doctors believe blood tests very inaccurate and also believe that TSH (thyroid stimulating hormone) will be low if you are on meds as the body won't need to be making it. There is a lot of controversy surrounding meds, my doctors believe 'porcine thyroid extract' (made here on script by compounding chemist) is better than thyroxine as it is T3 /T4 in same % as human thyroid, rather than just T4. I believe in the US thyroid extract is marketed as Armour. A really good way to test thyroid is to measure vasal metabolic rate by taking your temperature in the mornings before getting up. Take it for a week. If it's below normal consistently = under active. My Dr has a reflex hammer hooked up to a latop with a program that gives reading on reflex, another sign of hypothyroidism. I also used to have carpal tunnel syndrome, almost had surgery until my switched on doc said it was thyrod related, got on meds, no carpal tunnel probs since. My Dr in Sydney, Ludka Berkowski is very switched on with thyroid and herself studies under Dr Thierry Hertoghe (3rd generation endocrinologist) from Belgium, he is very much in the way of modern thinking re thyroid rather than the conservative way of most Drs. I also once read a book by Dr Broda Barnes, now dead but his family xarry on his work in California. I keep an eye on myself because last (local) GP, practically screamed at me 'do u know how many women with thyroid problems I see every week? How cone I've never heard of thyroid extract?' I said back, you obviously don!t keep up with research! To be honest, I'm so sick of doctors who are too busy to keep pace with new practices and then treat me like I'm a flaky idiot. I travelled 5000km to Perth 5 years ago to see my favourite doctor and you!d think I could find a switched on Dr in Sydney (Ludka now only works when I can!t get there). Enough ranting, I'm off To the beach

I!ve also been battling idiot GPs who have no knowledge of thyroid in 21st century, I have been lucky in the past to have 3 fantastic ones who specialise in hormones in their GP practices, however they are not available to me now. these doctors believe blood tests very inaccurate and also believe that TSH (thyroid stimulating hormone) will be low if you are on meds as the body won't need to be making it. There is a lot of controversy surrounding meds, my doctors believe 'porcine thyroid extract' (made here on script by compounding chemist) is better than thyroxine as it is T3 /T4 in same % as human thyroid, rather than just T4. I believe in the US thyroid extract is marketed as Armour. A really good way to test thyroid is to measure basal metabolic rate by taking your temperature in the mornings before getting up. Take it for a week. If it's below normal consistently = under active. My Dr has a reflex hammer hooked up to a latop with a program that gives reading on reflex, another sign of hypothyroidism. I also used to have carpal tunnel syndrome, almost had surgery until my switched on doc said it was thyroid related, got on meds, no carpal tunnel probs since. My Dr in Sydney, Ludka Berkowski is very switched on with thyroid and herself studies under Dr Thierry Hertoghe (3rd generation endocrinologist) from Belgium, he is very much in the way of modern thinking re thyroid rather than the conservative way of most Drs. I also once read a book by Dr Broda Barnes, now dead but his family carry on his work in California. I keep an eye on myself because last (local) GP, practically screamed at me 'do u know how many women with thyroid problems I see every week? How come I've never heard of thyroid extract?' I said back, you obviously don!t keep up with research! To be honest, I'm so sick of doctors who are too busy to keep pace with new practices and then treat me like I'm a flaky idiot. I travelled 5000km to Perth 5 years ago to see my favourite doctor and you!d think I could find a switched on Dr in Sydney (Ludka now only works when I can!t get there). Enough ranting, I'm off To the beach