I was originally diagnosed with Hashimoto's thyroiditis in June last year. Following several visits to my NHS GP I eventually persuaded him my low energy and pains in my back were not general back pain, he agreed for me to take blood tests. These showed I had Hashimoto's and gave the following results
TSH 11.61 mIU/L range 0.27 - 4.20mIU/L
Serum free T4 level 15.9 pmol/L range 10.00 - 23.00pmol/L
The doctor prescribed me initially with 25mg of levothyroxine and diagnosed me with hypothyroidism. Since then my TSH has fallen and my dose was upper to 100mg. Unfortunately I could not get my TSH to levels which he was happy with and I felt awful, unable to focus always tired etc.
He referred me (fortunately I have health insurance) to a private endo who upped up prescription to 125mg and ran a number of tests, one of which was glandular fever which can back positive. I have seen him and had bloods done a few times following this initial appointment. My last set of bloods came back with the following results
TSH 3.76 miu/L (0.27-4.2),
fT4 24.9 pmol/L (12-22),
fT3 4.5 pmol/L (3.1-6.8),
Vitamin D 75 nmol/L
I also had a genetic test which showed I have a polymorphism affecting the DIO2
gene. Which means I have a problem converting T4 to T3.
He gave me prescription for T3 (private prescription) and asked I drop the T4 to 100mg in addition to recommending I take a high dose of vitamin D3. I have found out T3 is expensive in the UK and I the only place I can get it from at an affordable cost is Germany or the USA.
My goal is to get off the private prescriptions, as each year I claim on my health insurance it goes up 25%, after this term I will not be able to afford it. I spoke with my GP and they will not subscribe T3 despite the test results, I have asked for a referral to a NHS endo. This is really annoying as its wasting NHS money!
I have the following questions and would be grateful if someone can help or provide guidance?
1.I am confused as the above results are all in range apart from my fT4 (high) why would he prescribe more T3? Is there an where I can go to look this up and improve my knowledge on this?
2. Is T3 still prescribed to NHS patients? I am trying to get a referral to an NHS endo to get an NHS prescription longer term. Am I just wasting my time?
3. I have seen lots of bodybuilding websites selling T3 all want cash transfer and are unsecured sites so I dare not use them, could someone PM me sites they have used for T3. At present I have ordered from the USA (expensive and a long wait + having to pay customs) and a German site. I am awaiting to receive the T3.
If you have got this far thank you for reading and if you can help I would be very grateful. I am reaching the end of my tether with this it's a roller coaster of emotions.
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gary7878
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Your results are a little unusual. TSH is quite high indicating undermedication but FT4 is over range which indicates over medication. FT3 is less than halfway through range. I imagine your endo increased T3 dose to raise FT3 and reduce TSH. You should have a follow up thyroid test 6-8 weeks after endo raised dose to check FT3 remains within range. If you post the results and ranges in a new question members will advise.
It is increasingly difficult to get T3 prescribed on the NHS and some NHS CCGs and health authorities won't prescribe it to new patients. You can buy T3 online without prescription but you won't be able to get Thybon without prescription.
VitD 75 is replete but 100-150 is optimal so I would continue supplementing 1,000-2,00iu daily until April when there will be sufficient ultraviolet light to stimulate natural vitD.
You have Hashimoto's, so have you also had vitamin B12, folate and ferritin tested. These are frequently too low as well
Plus are you on gluten free diet, or tried it.
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
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Very often essential to be gluten free, especially if going to be on T3. Also important to have good levels of B12, folate, ferritin and vitamin D
Which CCG area you are in depends, at the moment wether you can get T3. This situation should be rectified. NHS tried to ban it completely, but that was over turned in November. It should be available via secondary care, if clinical need
Swale CCG in Kent apparently are offering DIO2 test on NHS and recognise if gluten or dairy intolerance is problem and gut biome affected,, in both cases will apparently agree to needing T3
A few CCG's recognise that if NHS endocrinologist or NHS psychiatrist say patient has clinical need then it's allowed
Many areas refuse to test T3, or refer anyone with Hashimoto's to an NHS endo, and waiting list is many months
A few, like Brighton refuse point blank regardless of who's asking
See Improve Thyroid Treatment campaign group on Facebook. They are compiling list of CCGs and their policies
NHS England say, if currently prescribed by NHS endo or psychologist then should be allowed to continue. And new referral, same applies. In reality many are just having prescriptions withdrawn without consultation
Who diagnosed you with Hashimoto's Thyroiditis? Have you seen a blood test result for the one or both thyroid antibodies (Peroxidase &/or Thyroglobulin) which show it is Hashimoto's and not Hypothyroidism? Interesting you have already been told you have the faulty thyroid gene DIO2, although no doubt because you went privately. In my own case, I had to pay for a private blood test to confirm that my thyroid antibodies were raised & I therefore have Hashimoto's.
Regarding the DIO2, I again paid for a private (saliva) test to prove that my body can't convert T4 into the usable thyroid hormone T4. Once I had the confirmation of the faulty DIO2 gene, I printed out 6 copies; waved one in front of my GP; she then made an appointment for me to see an NHS endocrinologist; and the endo. in turn agreed to prescribe T3 on the NHS. Because GP's are not allowed to prescribe T3 now, I have to see the endo. every 6 months to beg for my 6 months T3 supply. Therefore your DIO2 Results are like gold to you. You have paid for the tests; you are legally entitled to have copies of all of them.
I have been trying a gluten-free diet 10 weeks now however it does not seem to make any difference. I was low vit D and low iron, I now take supplements and eat more red meat for the latter
Hi Gary - re the gluten free - give it a bit more time. I was gluten free for two years and then decided to try some delicious bread in France about two months ago. I felt really unwell for the next few days. Coincidentally I had a blood test booked and my antibodies had gone sky high so I definitely know that gluten is a no-no!!!
Last week I started taking 2000iu daily along with Multi vit's which the endo recommended. For the iron I am eating more red meat. I have high zinc and am awaiting current test results. The issue I have is the multi vit's all contain zinc and as a result I am consuming 500% RDA. So if the test comes back as being high then I will have to break up my supplements or at least this is what the Endo suggested. I am not sure what the impact of having high zinc is?
B) it's not enough of all the ones we are low in to do much good
If your low in B vitamins, then a good B complex
Vitamin C , selenium, magnesium and vitamin K2 all as separate supplements
If low ferritin, then going to need a lot more than in a multivitamin
greygoose will no doubt say more about multivitamins too
How low was your vitamin D result? 2000iu is possibly only a maintenance dose, though we are all different in how much we need. Usually to increase its 3000-5000iu. If extremely low you might need even more
How many different multi-vits are you taking? Or do you mean that all multi-vits contain 500% RDA?
Hypos are usually low in zinc, anyway. So, you probably need to take some. But mult-viits rarely contain good, easily absorbed ingredients - usually the cheapest possible! They are a total waste of money. And it's not really a good idea to take advice on nutrients from any doctor, because they just don't know enough about it. They don't even know basic chemistry because most multi-vits contain iron AND calcium, and the two bind together, as any schoolboy knows, and cancel each other out. Not only that, but the iron will also block the absorption of all the vitamins. So, really not worth spending all that money on buying them.
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