Taken me a long time to do this & not sure how to but I am rather scared now, so asking for advice. My GP has told me to get back to him when I've done some research . My story is on my profile. Jan 19 my GP decided to drop my Thyro from 150 to 125 mg/day & now wants it down again. Since then I have several Hypo symptoms & am unwilling to get more. But at 73, they could be just old age! The only good thing is that my early morning resting pulse has gone up from being in high 40s to middle 50s. These are my blood results over last 12 months. In 2017 he asked for FT4 & FT3 but only FT4 was done & hasn't been done again till this year.
TSH
01.19 0.03. Range 0.27-4.2
03.19 0.12
06.19 0.26
01.20 0.05
FT4
05.17 4.2
01 20 26.4 Range 10.5-25.5
Presume ranges for FT4 were the same from GP's comments.
I have no explanation for these results. My GP says it is impossible to tell if it's poor conversion or too much Thyro. I would like to know if once in your blood does it just stay there-is the amount cumulative & also what damage is it doing to me please? And of course can anybody suggest an explanation the above results? I would also welcome advice on what to say to my GP-what would be the next step. Thank you.
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First question—did you take your thyroid medication (levothyroxine) before going for your blood test?
The reason I ask is because many doctors don’t mention this—but if you’ve just taken it before a blood test, your levels of FT4 will read artificially high.
And many doctors don’t know this either—TSH doesn’t mean anything once you’ve begun taking levothyroxine. If it’s low, it doesn’t necessarily mean you’re taking too much levothyroxine. It’s FT3 which really tells the story of whether you’ve got enough active thyroid hormone in your system. But again, many doctors don’t know that. They’ve been trained that TSH is all you need. But it isn’t true, and many many people find themselves on too little thyroid hormone replacement because of a doctor lowering their amount, trying to get TSH to rise when it never will.
Hello thank you for your advice. Yes I took my Thyroxine before I had blood taken- but then I always have done. It's not easy arguing with your GP is it-they seem to hold all the cards. I am of the generation when they were revered so it feels wrong.
As you are coeliac it’s likely conversion of Ft4 to Ft3 will be poor
And vitamin levels likely very low
What vitamin supplements are you currently taking
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
No-it's not how I have my tests done at all-but it will be from now on thank you. I do take quite a lot of supplements-I don't know how much detail you need, so at the risk of boring you I will give the strengths.
Good quality probiotc
Vit D3 1000iu
Glucosamine 500mg, chondroitin 100mg, MSM 100mg
Turmeric 2000mg
Omega 3 500mg
Vit B complex-all at RDA 100%
Also vits & minerals every day-however the formulation of the ones I use has recently changed to include most of the vit B complex at the same dosage & the D3 at a lower dosage with the following as well, so I have adjusted accordingly.
Vit C 400mg
Zinc 10mg
Vit K2 75mcg
Iron 7mg
Manganese 2mg
Vit E 6mg
Vit A 800mcg
Copper 1mg
Selenium 55mcg
Some of these are to support my knees both of which I have injured over last 4 years & neither of which are great.
I consider my CD to be pretty well controlled although I did have a bad 'gluttening' a few months ago- but that is very rare. I have not had my annual bloods done yet. I have not had D3 done since 2017 when I presented with muscle pains & it was found to be on low side. GP advised taking a supplement but hasn't checked my levels. So test results are 06.2019
Serum ferritin 127 mcg/l (range 30-400)
Serum Vit B12 349ng/l ( range 180-999)
Serum folate 18.9 mcg/l ( range >3mcg)
05.17
Serum Vit D- no designation of which- 50nmol/l - comment on results-may be adequate.
Thank you so much for your interest. Honestly, I didn't know where to turn. My GP told me that being over medicated can cause strokes & heart attacks & it's really worrying me as I have been so for many years.
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If taking any supplements that contain biotin, eg most vitamin B complex, remember to stop taking this a week before any blood tests as biotin can falsely affect test results
As others have said ....TSH is not a thyroid hormone....it’s a message from pituitary...it should be low
Most important result is Ft3, followed by Ft4
If Ft3 is not over range you are not over medicated
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
I don't really know a lot but from this forum I understand most doctors don't like our TSH to be suppressed - but their thinking is flawed. Hopefully someone else can explain the reason why?
Did you feel well before your dose was reduced? I think how you felt is the important thing.
It seems most NHS labs don't/won't test T3 even when doctors have requested it. Can you afford to pay for a private test? Most people on here use Medichecks (who do offers on Thursdays) or Blue Horizon. I suggest you pay for a test which includes T3 then post the results on here for further advice.
Don't let the doctor reduce your dose further in the meantime.
Yes, they will blame various symptoms on your age!
EDITED - sorry just read the end of SlowDragon's advice re: tests.
Thank you-yes I will get the test done privately if he won't/can't do them. He did ask me when I last saw an endo & having thought a few sec I told him it was in fact over 50 years, which shocked me as much as him I think. He said if I wasn't happy after dropping my dose he would refer me but now seems to be fudging the issue. I had asked last year if my dose could be raised as my early pulse rate was now so low-he said-well it's alright now-it's 60! And my weight was getting problematic-we don't prescribe thyroxine to help you loose weight-was what I got. Life is stressful-I can't think if I felt well-it's insidious isn't it. But certainly better than I feel now I think.
One thing I’ve never understood are the so called dangers of having a suppressed TSH. We learn that the TSH is the messenger asking for more thyroxine you be released if we haven’t got enough and the higher the TSH is then the body is screaming more for our body to get it under control. So to my mind low reading means our body isn’t screaming for more medication therefore our thyoid must be working well. I’m sure it’s not as simplistic as that but it doesn’t seem logical either.
The principle seems to be that the difference between a TSH of, say, 1.0 and 0.0 (or close) is dramatic and causes these awful things to happen.
BUT a TSH going from 1.0 to 5.0 is neither here nor there, wait until it reaches 10.0 before doing anything.
They NEVER even consider that, if TSH does have non-thyroid effects, such a large increase in TSH would appear likely have a much greater non-thyroid impact than the tiny drop.
They NEVER even consider that it is likely the change in thyroid hormone levels which has resulted in the TSH change that might actually be having any effect, rather than the TSH itself.
And that is the frightening thing-we are treated, or may be monitored a better way of looking at it, by a doctor who at best understands very little and at worse does not know or understand how to treat us. In a lot of instances they never even ask how we feel either!
Doctors are told to follow NHS guidelines and I think they are frightened not to follow the rules just incase they are struck off. Dr Skinner was hounded because of it and I think any other Doctor would be treated exactly the same.
Well my TSH was suppressed at 0.002 for over 2 years and several Doctors including a Dermatologist did not spot it and I paid her £150 and she tells me to use regaine because I had female pattern baldness. I even asked her could it be my thyroid and she said no your results look normal. Wrong! I feel asking for a refund all these years later.
Were you diagnosed with Graves Disease back in 1971, hence the partial thyroidectomy ?
In order to go back to your doctor with the appropriate information you will need to have a full thyroid blood test to include TSH, T3, T4 and ferritin, folate, B12 and vitamin D.
So the next step would be to arrange a blood test, and since your doctor doesn't seem able to action a T3 blood test, you may need to have these blood test actioned privately.
It is not impossible to know the answer but maybe it is impossible for your doctor to action the full thyroid blood test to include the vitamins and minerals, as many of us on this site have found ourselves in similar situations with our doctors and had to resort to doing the blood tests ourselves.
You can arrange for your bloods to be taken by a private company and if you wish, a home visit can be arranged, so the nurse comes to your house to take your blood and there are details on the Thyroid uk website of companies offering this service.
Currently one private company, Medichecks has the Thyroid UltraVit at a discount and it covers all the tests you'll need to have actioned.
Once with the results start a new post with the results and ranges and people better able than me will give you considered answers to equip you better to discuss with your doctor.
Levothyroxine is a prohormone and needs to be converted by your body into T3 which is the hormone that the body runs on, and I read most people need to have around 50 T3 daily to function.
We can check your ability to convert the T4 into T3 by having both T3 and T4 measured. One simply divides the T3 result into the T4 result and your conversion ratio is the fraction answer : 3.5 - 4.5 is presumed acceptable with most people feeling well at around 4 .
There are thyroid hormone replacements other than just T4 and those with a fixed ratio of T3 and T4 are with a 1/4 ratio - this ratio seems to be acceptable for many people, but some people need to adjust this with a little more T3 or T4 and then there are other people who can't tolerate Levothyroxine and need to take T3 only.
Your conversion can also be compromised if your vitamins and minerals are not optimal, so then hence the need for a full blood panel and then we have covered all the bases.
It would seem that your hypothyroid symptoms started to appear after your doctor decreased your Levothyroxine, and the most logically thing to say is to go back up again, increase your metabolism and loose the insidious hypothyroid symptoms.
Your dose should not be age dependant, but I have a feeling that doctors are advised to consider dosage levels of patients at a certain age. I am 73 this year and have no intention of dropping any thyroid hormone replacement as I would think, as we age, it's even more important to be fully supported with thyroid hormone replacement.
I'm with Graves Disease post RAI ablation and currently self medicating as I was unable to get a trial of T3 on the NHS.
Hello pennyannie-all I was told was overactive thyroid & thyrotoxicsis. I know I was terribly ill. We didn't know to ask or question doctors back then-we were simply grateful for being treated. If it helps-it came on suddenly -within a month after a pretty minor car accident when I was driving-not my fault. It was put down to the shock of that. I don't know how much was known about the different types of hyperthyroid either. There was little if indeed any information for the layman. They found they had to give me as much thyroid suppressant as they could along with diazepam (& anti nausea meds) to get my pulse down to under 180 even on bed rest in hospital-so surgery was their treatment of choice once they felt I was strong enough. I remember the suppressant was stopped 2 weeks before surgery & I was given iodine to drink so that they could see where it was overactive. It was horrible not least because I did have a goitre but it was growing inwards so it was hard to speak or swallow towards the end of that. At the time my GP had been unaccountably treating me for migraine despite my protestations. It took from March to August to be properly diagnosed-a month of bed rest in hospital then the surgery the following Spring. A full year off work then 6 months part time. But I felt great after it all & have done all that time. I will ask if there is anything more on my medical records but I am very doubtful there will be.
I ask because, if with Graves Disease, we carry the TSI/TRab antibody gene, which 'sits on' the TSH and can give a false low/suppressed TSH.
You might like to take a look at the Elaine Moore Graves Disease Foundation website where she goes into greater detail on the false low TSH in Graves Disease.
This lady has Graves Disease and went through RAI in the late 1990's. and finding no help with her health issues wrote a book to help others in a similar position to herself.
She is a medical researcher and now runs a very well respected website offering all Graves patients a platform and open forum, much like this amazing site.
Graves is an autoimmune disease and there is probably some genetic predisposition, maybe a generation away from you, and I read it can be triggered by a sudden shock to the system, like a car accident or unexpected death.
Consequently it is vital that we are not monitored or dosed solely on a TSH result as it can give the impression that we are overmedicated when in fact the opposite is more likely to be the case.
Obviously, for a considered opinion, we should all be offered a TSH, T3 and T4 taken from the same blood sample to rule out the guess work that taking just a TSH offers, and this is especially true for Graves Disease patients.
Thank you all so much-what an amazing group of people you are! Kind & generous to a fault with your knowledge & time. I am looking through it all, watching the videos & trying to get my head round it all-no easy task. I will make an appointment with my GP so I will have a deadline to work to. My goodness-this having a medical problem is exhausting. How do people who feel really ill manage!
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