Hello again, after hours of research and several hours of "no,they're not covered" from AXA, I finally went to a private endo this morning. It was awful. I couldn't get a word in at one point and when I finally started to try and explain my symptoms, she said, "Enough!"
I don't know what else I can do. She told me TSH is the main marker of thyroid health and mine is suppressed so I'm overmedicated. I need to reduce my dose to get it in range. My FT4 and FT3 are ALWAYS well under range (usually ft4 7 [12-22] and ft3 2.8 [3.2-6]. She didn't know why. She told me I'm at risk of heart problems. I said, "is it not the case that suppressed TSH is ok as long as my FT3 is unequivocally normal?" And I said I understood taking t3 suppresses TSH. She said, no, TSH is only suppressed when you're taking too much.
She said that it could be that the lab is getting it wrong and to try a different one (I use different labs already), she told me to try dropping T3. I asked about dropping T4, because I'm sure I feel worse on Levothyroxine, and she then told me to take a blood test an hour after taking my medication, and possibly drop both T4 AND T3 down to 100 T4 and 20 T.3.
But I already know that doesn't work because I've been through every iteration of the medication, from 25mcg T4 up to the 200mcg T4/30mg T3 combo I take now. Nothing has ever worked.
I expect the insurer won't authorise another specialist, but can ANYONE please tell me if they've had unusual results and seen an endocrinologist who had authorised T3 only at a decent dose?
The endo today said I should ask to be referred to a clinic in Cambridge that specialises in strange results.
I'm desperate.
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Kitty1watson
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I couldn't get a word in at one point and when I finally started to try and explain my symptoms, she said, "Enough!"
If that happened to me I would be absolutely furious! You are paying for an appointment to see this doctor, and she basically tells you to shut up. How dare she!
I've seen arrogance in doctors so often and I wonder if they get trained in it from birth or whether they learn it as medical students.
The points at which she disagreed with you make it clear that she doesn't keep up-to-date with the latest research. T3 does reduce TSH in most people, and denying it doesn't make what she say true.
My FT4 and FT3 are ALWAYS well under range (usually ft4 7 [12-22] and ft3 2.8 [3.2-6]. She didn't know why. She told me I'm at risk of heart problems.
If you are at risk of heart problems it is because you have too little Free T3 not too little TSH.
I'm actually waiting for some extra T3 to arrive! 😃 I was really hoping to get some kind of professional endorsement, so my GP would allow me to have it prescribed at a better dose, but I'm not going to get that, it seems.
I know, I stopped talking, slightly shocked, tbh, as she wasn't listening to anything I was saying. I can't imagine what would happen to me if I spoke to a client like that. Well, I do, I'd be disciplined or dismissed. Most medical professionals seem to talk to everyone like they're pond scum.
I told her my last endo told me my DHEA was suppressed and needed supplementation and then she kept saying "of course, we don't *know* your levels are suppressed...." I had to say twice, but she wasn't listening, that the endo had TOLD ME my levels were definitely suppressed, it was in my results, not supposition. She then told me DHEA was pointless, so she clearly had no intention of prescribing it from the start. 🤷♀️
I wonder why the body makes "pointless" hormones like DHEA?
Unfortunately, in the UK DHEA got declared to be an anabolic steroid, and was thus banned here. It actually appears in the list of controlled drugs so you can't even legally import it from abroad.
In the USA it is available as a supplement over-the-counter.
DHEA does appear in the BNF (British National Formulary) but only as a single product - a cream for women with vaginal atrophy.
I'm so sorry you've had an awful experience. I'm always shocked to hear them. I have nothing useful to add apart from asking if you've looked through the thyroid uk list of useful endos?
Yes, but I'm struggling to find one approved by AXA. Their system is insane. I've had to give them a name and then wait for them to tell me if they're covered. If they say no, I submit another name.... there have been a lot of "No" responses, and some they've approved of have awful reviews. One had a catalogue of reviews saying he was an open misogynist. Not what I need!
I've just sent them another name, but now I've seen this awful one this morning, I'm worried they won't fund anyone else. I've also asked for costs information about the person recommended to me today, by private message. I only booked the appointment with this morning's endo yesterday afternoon so I'm a bit gutted they fitted me in immediately, now I have a recommendation! 😭😭😭😭
Some doctors who specialise in a health condition might dismiss the person whose body is not working as it should do - due to some vitamins/minerals that might be too low.
I doubt they kow anything about diagnosing/treating/prescribing for a patient who has several symptoms and I think hypothyroidism must be at the bottom of their list.
Mine phoned after my umpteenth blood test to tell me I had nothing wrong! I cried as I was too unwell. I got a copy of results from surgery and TSH was 100.
It was only thanks to Thyroiduk.org.uk that I diagnosed myself and have been now prescribed T3 alone.
At that time I was able to consult with the 'last two' doctors who knew inside/out about symptoms/treatment of hypothyrodism.
Unfortunately, those in 'power' removed NDTs (natural dessicated thyroid hormones) first used in 1892 and saved lives from then on - without the need of blood test results and doctors only going by the patients' symptoms.
I am so sorry you had such a horrible "endo". She does not deserve the title. B*tch would be more appropriate. If AXA come back that they will not fund another appointment, tell them this woman should not be on the list as she is dangerous. Getting her dropped from their list would be a slight revenge.
A suggestion - a friend had terrible endometriosis and the local GP did nothing. We looked up where a good gyni department was and travelled to that town. She lay down in M&S sobbing, they called an ambulance, she was operated on the next day, and got a bunch of flowers from M&S. A drastic solution, but it worked!
Thank you everyone. I've had two PMs recommending two other specialists and I've sent an enquiry to both. One has responded already, so I'll try and see them. Will have to be in a month or so, when I'm paid again, unless AXA will cover it.
Axa should pay for a second opinion, most of their policies include this benefit.
I would strongly suggest seeing a recommended Endo from forum members’ experience, don’t just take a stab in the dark. Axa have really pushed down rates so a lot of good doctors refuse to work with them, do ask Axa if you can top up the difference between what they pay and the doctor charges. Better to pay the additional amount and get what you need.
Thank you. I've booked an appointment with another doctor, who someone on here recommended, and AXA is covering it, as you have said. It's not until September but I'm hopeful.
I have heard about T3 injections, it looks like your issue is malabsorption- your results just look like nothing is making it into your blood stream. It might be worth researching. However, if your TSH is suppressed on treatment then I guess this means that you are in some sense absorbing it… maybe your personal reference range is just very outside the norm… are you very small??
I have also heard about thyroid hormone resistance in rare instances where people require massive doses of thyroid hormone to get treatment to work. This might be you?
Liothyronine 20microgram powder for solution for injection vials Advanz Pharma
Size 5 Unit vial
Drug tariff price £1,567.50
They appear to have only one approved use:
Liothyronine Sodium Injection is indicated for the treatment of myxoedema coma, usually in conjunction with other measures including the intravenous injection of a corticosteroid. For the treatment of less severe forms of myxoedema and for maintenance therapy, orally administered liothyronine should be used.
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