Ive had two telephone appointments with my endocrinologist where Ive asked for a trial of t3 and long story short he said no. Ive made it clear how ill I am, can barely function but as my tests come back as normal he says levothyroxine is still the best medication.
Im naturally angry, frustrated and more but mostly just really upset, all I want to do like anyone is feel better.
We know how wrong it is, and part of me wants to fight to get what I need but Im so ill and exhausted I just cant do it at the moment.
My next thought is my GP, I know they cant prescribe it any more on the nhs but can they write a private prescription and if so would it still need monitoring with an endocrinologist ?.
Thanks
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Do you know what your actual results were? Just saying "normal" isn't anywhere near good enough. You want to see where, within the range, your free T3 and free T4 actually sit.
May I suggest a different next step before going private? Assuming you do have a conversion problem, if you are already getting a referral to an endo from your GP, it might be worth trying a different endo - eg one on Dionne's list of T3-friendly endos - email her on tukadmin@thyroiduk.org. You can be referred to anyone in the country [obv has to be reasonably convenient]. May also be worth looking up your current endo - most hospitals have a little biog. If it's obvious he is really a diabetes man [and let's face it, most of them are] that gives you ammunition to ask to go to someone else.
I started over seven months ago at a tsh of 5.96 and had several adjustments to levo dose which got me quickly down to a low tsh. The only symptom that has improved in that time is my appetite all other hypo symptoms are just the same.
My endocrinologist is a specialist in parathyroid disease , I have hypoparathyroidism as a result of total thyroidectomy. He took over my thyroid treatment along the way, never officially asked to hes just always looked after it at the same time . It took a long time and several awful doctors to find a good doctor for parathyroid disease and hes kept me well as far as that goes so Id be extremely reluctant to change doctors.
All the endocrinologists Id seen up until then have been local hospitals, and I had to see them for both thyroid and parathyroid disease, and were quite frankly rubbish for both.
I dont know if its possible to see different doctors for two different issues, I was told I could only have one as my GP can treat my thyroid.
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?
Ft4 is only 57% through range
Ft3 is only 17% through range
Helpful calculator for working out percentage through range
Hmmm. As SlowDragon says, these results show a real conversion problem.
Couple of thoughts. First, next time you have a face-to-face meeting with the endo, can you take a man with you. I know we're not in the 18th century, but for some reason women so often don't get taken seriously when we're on our own. And point out your dreadful conversion and ask just how bad your T3 needs to get, and how ill you need to be, before they will trial you with T3. There's an outside chance that if he realises you know what you're talking about, he may give it a try. Ask if he prescribes T3 for anyone and what his criteria are, if he does, and his reasons are, if he doesn't.
I have made it clear to the doctor how poorly I am, and told him I believe Im not converting t4 t3 properly. I think he was a little taken back that I had any idea at all . He said several times theres no proof it works, I pointed out that the many people who do well on it are proof that it does.
I asked if he does prescribe t3 and said he does but in only exceptional cases .
I told him how poor my quality of life is and that should be grounds for at least a trial.
We seemed to go round in circles, and I practically begged him to at least give me the benefit of the doubt and just see if t3 worked. His answer was lets check bloods again .
I did and next phone call he came back with same reply, no proof it works and my normal blood tests dont warrant a trial.
My husband always goes with me and my next appointment isnt until the end of August.
I honestly think Im fighting a losing battle with him, I cant see him changing his mind, I think I got my point across pretty good and I made it very clear how poorly I am, dont think theres anything else I could say to him.
To wait until then knowing theres next to zero chance of him changing his mind while as poorly as I am feels a bit too much, so thats why Im looking for alternatives.
This is why Im hoping my gp can write a private prescription and I try and source it for myself, of course at much reduced price which I know can be done.
So as it was Hashimoto’s are you on strictly gluten free diet?
Conversion is often poor with Hashimoto’s
Hashimoto's frequently 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 intolerance. Second most common is lactose intolerance
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find strictly gluten free diet reduces symptoms, sometimes significantly. Either due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Removing thyroid doesn’t stop remove the ongoing autoimmune aspects of Hashimoto’s
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test, or buy test online BEFORE trying strictly gluten free diet
Assuming test is negative you can immediately go on strictly gluten free diet
If coeliac test is positive you will need to remain on high gluten diet until endoscopy, with maximum 6 weeks wait, officially
Trying strictly gluten free diet for 3-6 months
If no noticeable improvement, reintroduce gluten and see if symptoms get worse
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
No Im not on a gluten free diet, no stomach problems though.
My vitamins all check out good following advice from my previous posts, all well into range.
I take my levo an hour before breakfast and at least 4 hours away from any other medications.
I was taking an extra 25mcg of levo per week which pushed my tsh down to around 0.4 I was starting feel like maybe it was a bit too much, too hot etc, so doctor said to stop taking that extra 25mcg, that was nearly eight weeks ago.
Before this levothyroxine always worked well, it was reliable and any adjustment needed worked quickly no problems until just over seven months ago. Adjustments were only done if I gained or lost weight but as I say symptoms quickly resolved with with a change in dose.
I have a healthy diet, nothing has changed in the way I take my levo, its been the same since my TT over nine years ago.
I asked my GP if she would write me a private prescription and she said she could but that I would have to pay, I asked her how much and she said hundreds..
Can I suggest the genetic test for DI02, you can find out about it from TUK website. It if found to be positive is proof that you convert badly and that you need T3. Lots of people have been prescribed T3 on the basis of it who would not otherwise have had it considerred. It might be the nudge your endo needs.
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