Can anyone explain why my TSH is low yet the rest is normal? I know my new doctor will be onto this in a flash when they do a test shortly and probably reduce my levothyroxine (I`ve had this battle for years)
The following is a private test
T4 = 121 range 59-154
TSH= 0.11 range 0.27-4.2
Free T4 = 19.5 range 12.0 - 22.0
Free T3 = 4.5 range 3.1-6.8
Peroxidisas ab`s <9.0 range- 0-34
Thyroglobulin Antibody 14.1 range 0-115
I am on 150 micrograms of levothyroxine and have been for 22 years (up to 200 micrograms at one point). I feel ok except I get tired but not overly so.
My main problem is that I cannot lose weight, currently 13.5 stone at 5 foot 4 inches. I did see an endo 7 years ago and my results were similar to todays. I got him to write me a letter for my doctor so I didn`t have a battle every time they tested my bloods. This worked for 7 years but now I have moved area and have new doctors I know I will have to fight again to stay on the 150 micrograms and not have it reduced. To see another endo up here near John O Groats would involve a long journey and I am nearly 66.
This is that letter from the endo in 2016.......
`Further to my recent letter this lady's repeat thyroid function tests have shown a Free T4 of 20.35,a Free
T3 of 4.6 and a TSH which is suppressed at 0.069. This is only just suppressed. Given the severity of her
symptoms I would elect to continue on Thyroxine 150 micrograms once daily. `
I would appreciate any help and advise and is it worth me fighting for T3?
I don`t understand all this so forgive me if this suggestion is totally wrong.
many thanks
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destiny234
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The FT4 level is causing the "low' TSH but that isn't important here
TSH is a pituitary, not a thyroid hormone, it is a messenger and shows the overall thyroid level ( FT4 + FT3) but does not show the individual levels which are important
What is important is the low FT3 which I think you recognise!
For good health T3 must flood almost every cell in the body by way of an adequate and constant supply....your supply in not adequate!
Your T4 to T3 conversion is impaired ( high FT4 with low FT3)
You need to optimise vit D, vit B12, folate and ferritin to support thyroid function/ conversion
But with conversion this poor you would benefit from some T3 but this would involve a trip to Raigmore I guess!
T3 has initially to be prescribed by an endo
I would suggest you fight for T3!
Can you arrange a web consultation...ask your GP.
150mcg T4 is providing some T3 ( by conversion) but it is not enough for good health....you are still symptomatic.
Upping levo/T4 to even higher doses, long term, can introduce other issues
I had a similar problem but my symptoms left me barely able to function. Medics didn't recognise the problem....I had to research and find this out myself.
No need for any apologies, here we all understand thyroid challenges!
I suggest you have a chat with a GP, explain your concern and see if they will arrange an initial on-line consultation.
DippyDame, Thank you so much for enlightening me. I am glad to hear I need T3 then at least there is hope to lose weight if I manage to get it. I doubt very much that the doctors here will agree to it or even give a referel but I will try my best.
If I don`t succeed is there some way of buying T3 privately or do they all need a prescription and if so how do I get one if my doctor doesn`t agree?
Hi, I’ve been through this for many years. I know exactly what you are going through. After finally getting my GP to refer me to an endocrinologist I was put on Liothyronine. After moving I am now fighting to stay on it with my new endocrinologist. If you would like to private message me we can continue to commiserate x
Maybe I can save you some time: an NHS GP will do just about anything to resist T3 as the primary measure. I’ve even suggested reading material to mine. I will post my latest results in my own thread to see what, if anything, anyone thinks but for now, here’s my recent non-expert experience: after three years of what I thought was engagement with my GP, the only thing he does is send me message saying my TFT’s were fine. My T3 is 40% within range. It’s not that they don’t care, it’s just they don’t understand the relevance. Whether it’s cost, I don’t know but he will not prescribe T3 despite, at one point having me on 250 Mcg of Levo (and prepared to go to 300! As a next move). I reduced my dose as I didn’t feel well. As the half life of T4 is several weeks in the bloodstream, I stopped all together for four days and then restarted on 100, slowly raising this over the following weeks to 150, where I’ve remained. My T3 has risen slightly during this period.
Presented with this fairly clear evidence (IMO) of sole T4 dose being largely irrelevant, my GP went a bit defensive and told me (to paraphrase), “you are within range, theres nothing else to be done.”
I told him I would post the results here and see what this valuable group think tank says.
I also confirmed with him that he would refer me to any NHS endo that will prescribe combined dose treatment.
If I’m wrong, I’m wrong but I still feel a small dose of T3 on top of the current Levo dose would set me straight.
Generally: none of this is recommendation or expert advice. The guidelines are what they are and GP’s don’t have time for research so as much as I hate the status quo, it’s not his fault.
Our tales of woe are similar in that, my weight is causing other complications and no matter what I do I can’t shift it.
Good luck,
You are in the right place here. I am the least knowledgeable of contributors by comparison to others.
No I don`t recall ever having high thyroid antibodies. And no I have never had a thyroid scan.
Gluton intolerance is interesting as I do have digestive issues, i will look into this further.
I also have an autoimmune disease called Relapsing Polychondritis which started the same time as my thyroid problem commencing 22 years ago. Might be a connection.
So highly likely your hypothyroidism is autoimmune
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with themand their families and carers or guardian. "
If you add T3 then TSH likely to drop further. 0.01 is typical
So you may have to get endo on board ….or getting Levo on NHS can be even more of a struggle
I am going to try an endo privately who will prescribe T3 rather than wait for the nhs doctor to say no, which he will. I am not due to be tested by the nhs docs till december so it gives me some time to get tests and suggestions from an endo to help me fight the battle with the nhs doc. Thanks again
Coeliac test neg. Di02 neg. I have just ordered tests for Vit D, Cortisol and Estrogen, the latter two I believe can increase reverse T3 if elevated. Although I am 65 I have checked if I can still have high estrogen (menopause 10 years ago) and yes I can , for a variety of reasons ,including excess body fat (13.5 stone at 5`4") and high cortisol. I may order a reverse t3 test depending on the results of the aforementioned. And possibly a Dairy intolerance and ferritin and folate tests. My brain is exploding and needs more hard drive to take all this in 🙃 . Forthwithlife.co.uk are quite good prices for blood tests and cheaper than Blue Horizon
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