Hi, this is my first forum and I’m not even sure anyone will reply. I have had a hard couple of years of feeling lousy and struggling to get answers and tests for what could be causing it. I now know a lot ore but not through the help of my go. After limited tests with my gp and things coming back ‘normal’ (even though I was barely within the nhs ranges) and they are wider than they should be anyway for optimum health- I went to see a naturopath. I wanted to be referred but they just say no unless you show on those basic tests as being out of range. You could clearly see I was heading the way I have gone.
My nature path has been great with natural supplements as testing with her revealed high antibodies-and the first stages of hypo. We tested my thyroid with tsh very high - within range but the high end of range and low t4, t3. Hormonal Imbalances and high cortisol all day. Similar to others in this thread, I regularly wake with swollen hands and feet- it’s painful and uncomfortable. I have water retention a lot. My anxiety is high and my mood low. I feel like nobody will help me from a medical point of view. I hVe had to pay for all of this testing which isn’t cheap but the nhs tests, as you say only test the basics and they really don’t even seem to care.
I recently went back to my gp as although I have spent 6 months trying to heal things naturally I’m fast gaining weight and the symptoms are just as bad. I have outbreaks, bouts of not sleeping well, heavy irregular periods. I cry all the time. I’m trying to remain positive but I’m miserable. I asked for a referral letter to go private and she agreed and also to retest my thyroid and hormones. I felt so relieved it felt she was listening.
The day of my private consultant with an enfo comes, he reads my referral letter to say without any reasons, I can’t help her call her and tell her not to come and waste her time. I requested the letter and I can see why. As others in this thread have said they can miss key facts and results and put their own opinions in.
Can anyone please tell me the list of good endos and give any good advise. I’m willing to pay to feel better but don’t want to waste my life feeling rubbish. I’m based in Sheffield but willing to travel xx
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JessAA
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Hi JessAA , I’m one of the many on this forum helped by the Admins and others on here. I’m sure someone will be along soon to give you advice and links, but in the meantime there is access to a list of Endos on Thyroid UK, and if you could post any recent blood results (it’s your right to get from GP) that will help with advice. Many on here - me included - get private blood tests done and then post. Mine were through Medichecks and they have discounts on Thursdays. I got a test done for £79 that included thyroid tests and vitamin levels - important to have at optimal levels to help with recovery/optimum health.
I’ll check in later but I’m sure you will get some useful info and reassurance soon.
If you have high thyroid antibodies, even if TSH is within range you have an Autoimmune Thyroid Disease - called Hashimoto's.
When you have blood tests for thyroid hormones, it has to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levothyroxine (or other thyroid hormones). This helps keep the TSH at its highest but if you're in the UK doctors have been told not to diagnose us until the TSH reaches 10, whilst in other countries if it is above 3+ we'd be diagnosed.
Hashimoto's and Hypothyroidism are treated the same way, i.e. levothyroxine until the TSH is 1 or lower and Free T4 and Free T3 in the upper part of the ranges.
Read as many posts as you can so that you get enlightened and find a way back to good health. It is possible but we need sympathetic/knowledgeable doctors and many of us have found one or two.
Always get a print-out of your results and make sure the ranges are stated. Ranges are most important and enable members to respond to the results which cannot be done without ranges.
Your GP should also test B12, Vit D, iron, ferritin and folate as deficiencies in these can also cause symptoms.
Thyroid hormones should be taken on an empty stomach with ne full glass of water and wait an hour before eating. Food interferes with the uptake of the hormones.
If you want a private appointment email Dionne at tukadmin@thyroiduk.org who has a list of sympathetic doctors.
Hi thankyou so much for the reply and the contact, I have emailed her straight away.
Yes so to provide a little more detail.
My first thyroid tests (June) with the gp were: tsh of 4.3 I don’t have the others but will request.
My next lot of tests were (Nov) private tests. These revealed higher than ‘normal’ or ‘ideal’ antibodies of 57 (I think they should be around 30. I know many many people have much higher than this but whatever is happening is making me feel very poorly. My tsh then was 3.7 (within nhs range but my naturepath said ideally this should be more around 2 to feel good. My t4 and t3 were again within range but t4 a bit low at 90.8 and t3 a bit low at 1.7. She said I had early stages Hashimotos purely from the elevated antibodies but could be much more severe. So I have been basically implementing lifestyle changes and diet changes to try and reduce these antibodies and my levels before they got worse. The nhs were not going to help me anyway - they made that clear. I was within their range. In July my my ferritin levels were bleak 0.2 so was taking iron and then retested in October just before my private thyroid test and this showed it had risen to 15. Still very low though for optimum health. I also had a Dutch test for hormones and cortisol. This revealed high levels throughout the day and night. High in the morning as they should be to get you moving but then staying high from the afternoon to eve. It may be this that has tripped my thyroid and other hormones totally out of sync.
This is exactly why I need to see someone who mows their stuff. It’s all linked.
I have been taking supplements for my thyroid (nothing medical or homones) naturalness to aid its healing. I went back to my go to tell her I had been doing a natural route as I had no alternative but didn’t feel better so she retested me. My last lot of nhs tests for my thyroid function show a very different story. My tsh is now 0.02 high t4 of 21.4 and t3 out of range high at 9.8 (toxicosis?) I have literally just got these so no idea what my gp will suggest. So this is saying I now have an overactive thyroid but I certainly don’t feel like I do other than night sweats. I still have the swollen hands, lots of weight gain, yes I suppose a few chest flutters now but that’s in the family. I have of course dropped my supplements for fear they are too effective. I have read up a lot though and have seen that products containing biotin can provide false thyroid function results by elevating them. Many of my supplements contain this so have also stopped until I can be retested. I’m hoping to see what my gp says, before i take anything new I’m being retested just in case of the biotin issue. If anyone has any advise of what I can do to try and prevent weight gain that would always be helpful. I’m waking everyday to try and help things and eating a diet of foods my thyroid likes. It’s so nice knowing others are here to support I’m just sorry that so many people don’t get the right help they deserve xx
Biotin can make results either higher or lower than they actually are. My understanding of this is that it is in some way used in the process of assaying the results. But not really sure how.
One thing which I find frustrating is that using a TRH (thyroid resistant hormone), a very accurate picture can be formed of what is happening. But every endo I have ever spoken to does not want to do that, as it involves a more complicated procedure than a TSH.
I also empathize with your experience with a private consultant. I had increasing symptoms which are stemming from a long term neck pain and as I didn't want to wait for the NHS to give me an appointment, I borrowed some money off a relative.
When I saw the consultant, he was dismissive and condescending.
His recommendation is for a nerve block and then if that does nothing, further investigations will be done. The waiting list for the nerve block is around 40 weeks and at this point I cannot afford to go privately anymore.
The NHS is amazing when it comes to trauma and easily identifiable illnesses, when it comes to anything outside of those areas, I really get the impression that they are not interested in resolving long term problems that impact on people's ability to live fulfilled and productive lives.
My doc is great, she prescribed me cytomel (t3) when my old doc wouldn’t just because my TSH was normal. She’s at memorial Sloan Kettering hospital in New York City.
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