Hi. I'm new here and have been watching the posts for a few days whilst thinking about what to write.
I was diagnosed with hypothyroidism 22 years ago and have only ever had Levothyroxine prescribed. I'm currently on 125mcg. All GPs and endocrinologists I've come in contact with since my diagnosis have refused to consider anything else.
From the very beginning I told my doctor that I still didn't feel well on Levothyroxine but got no sympathy or help whatsoever. I have copies of my medical records from 1980 to 2008 but not since then and trying to get copies of anything from my current GP surgery is a hopeless task.
At regular intervals I have tried to get through to them that I don't feel right and I still have hypothyroid symptoms but my records just show them saying 'Can't understand why she's still gaining weight when her tsh is fine' and similar comments. When I pushed it one time and insisted on seeing an endocrinologist, he offered me a psychiatrist referral.
I have periods when I feel worse, usually after some traumatic upheaval in my life and at those times I have asked for help but got none.
In recent years my tsh levels have been up and down like a yoyo. Mainly since I had a serious accident in 2008 and have permanent neurological pain which I am now having regular capsaicin patch treatment for. Initially the doctors tried all of the usual pain medication and one of the meds they tried was Duloxetine, which is an antidepressant with a side effect of neurological pain relief (they said). It didn't help with the pain at all. Whilst I was on that medication, my thyroid symptoms worsened dramatically and when I had blood tests, the comment in my records was - 'abnormal tsh, is she taking her medication?'
It turned out that Duloxetine affects thryoid function and causes weight gain, fatigue, etc!! Nobody bothered to check at the hospital or the GP surgery for contraindications.
Since then I had a bad stomach bug following a holiday in Goa which prevented absorption of my levothyroxine and my tsh shot up again. The GP increased my dose to 150mcg and for the first time since my diagnosis, I started feeling better and losing weight. However, I had horrendous palpitations and my dosage was reduced to 125mcg but the palpitations didn't stop, then reduced again to 100mcg. The palpitations stopped but hypo symptoms returned with a vengeance and tsh shot up. So now I'm back on 125mcg with hypo symptoms that won't go away. Tsh is within range so apparently I'm fine now. My hair is so thin that my scalp is showing, I'm cold all the time, have no energy, my legs feel like lead. In fact I have almost all of the hypo symptoms on any standard list. Other than that I'm fine.
Two years ago I found out from a sympathetic locum that my thyroid disease is autoimmune. He tested me for antibodies, but when the result came back he told me that it was irrelevant because the treatment is the same whether it's autoimmune or not. It did, however, start me on a quest to find out how to help myself. I went gluten free in April 2016 and have felt an improvement since. I insisted on another referral to the endocrinologist, heavily armed with information, but got fobbed off again. He didn't listen to anything I said, and without discussing it with me, he sent a letter to my GP telling him to reduce my thyroxine to 100mcg. I strongly objected to this as it wasn't long since we'd tried reducing it and I still hadn't recovered. I asked for a second opinion and was referred to a different hospital.
The endocrinologist there didn't know what the BTA guidelines said so I offered him a copy which he politely refused. I had asked him for a trial of combination T3/T4, which the guidelines recommend for patients who don't respond well to T4. He ordered blood tests and a short synacthen test for which I have to wait until May to get the results.
In sheer frustration I self-referred to a private doctor in London and saw him last week. He was very good. He's ordered the full range of tests, which I've paid a fortune for. Again I have to wait for the results, but not as long as the NHS one.
I am alarmed at the cost of this and am wondering if there is anyone on here from the North West of England who knows of any sympathetic and knowledgable GPs or Endocrinologists nearer than London as it takes so long to travel down there and back through the nightmare traffic that I have to book overnight accommodation.
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Maggie0652
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Your story seems so very similar to so many here - it must be good that you are now with others that understand
There is private testing available through the main website of this Thyroid UK Forum through Blue Horizon- kits can be sent to your home and Thyroid Profile 11 is the most popular package used here it would seem.
Email louise.warvill@thyroiduk.org.uk who has a list of Endocrinologists. You can then chose a name and put on a new Post asking for a private message to be sent to you and whoever has seen them will respond.
One of our members and his team (scientists) have had a paper accepted that agrees with how most of us feel when add some T3 to levothyroxine. There was also a very similar paper from another Research group.
When we come up against a steel door there's no way through and that I think is what many of us come up against when, hoping against hope, that a person will be able to relieve our clinical symptoms - all of them. That's supposed to be the function of thyroid hormone replacements and many do get well on levothyroxine. Unfortunately, endocrinologists (I believe) and doctors have made the wrong assumption that levo solves our problems. Not if is insufficient in dose it wont and I too had severe palps on levo so fillers/binders can have a bad effect.
So many, when doctor has run out of ideas and gives alternatives to keep us quiet it can rebound, such as anti'ds or even antacids. They, when the patient keeps complaining, prescribes for the symptoms and not thyroid hormones so we can end up with several diagnoses/prescriptions.
Before blood tests were introduced we were diagnosed upon symptoms alone and given doses of natural dessicated thyroid hormones (no levo then either) until they were symptom-free. Doses around 200 to 400 mcg. One doctor, not an endocrinologist, informed the Associations that many hypo patients were given too low doses of levo to keep TSH in 'range' when it should be 1 or lower. Also all vitamins/minerals have to be optimum not just 'in range', i.e. B12, Vit D, iron, ferritin and folate which can give us symptoms of not optimum. Also doctors wrongly assume that a TSH 'somewhere' in range is fine even if around 4 or 5. That's why we have ever increasing members as people doing well on levo wont spend their time searching the net. Adjusting doses either (unless overdosed) doesn't bode well for the patient as they've no chance of getting a stable dose in which they feel well.
Ask GP to test TSH, T4, T3, Free T4, Free T3, and thyroid antibodies (if not done before). B12, Vit D, iron, ferritin and folate. He may refuse or labs may if TSH is somewhere in range only test T4 and TSH. You can, if you wish, use a private recommended lab and we have a list. Blood tests have to be fasting (you can drink water) and the earliest possible. Also allow 24 hours between last dose of levo and test and take afterwards.
Thanks, I've emailed Louise and got the list and there are some endocrinologists on it who are near me. My previous GP did try to get T3 tests for me but the lab refused to do them. The private Dr I visited last week has ordered all of the tests. I'll post the results when I get them.
Sadly your story is not rare. Many of us on here been through years, or decades of poor care, and been derided by medics for insisting that inadequate thyroid treatment is at root of our problems.
Best advice is to read as much as you can. Always keep copies of all your test results. Vitamin and minerals levels are very important. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten connection to autoimmune Hashimoto's
Like you, I found last year, after more than 20 years of hell, going gluten free has been transformation.
As most here already said it is so very difficult to get an Endo that looks at all of the problems that interlink. I personally had a very long road and am complex and still to this day have not sorted my problems as I also have other auto immune issues (but I know many that have with the correct help). I just posted a link to an amazing doctor in sussex who is a great medical detective if you look at my posts, but for complex thyroid/hormonal issues please see below:-
I have never known anyone more caring than Dr Henry Linder, he is a genius and although he is abroad he will start by phone consultation, he emails you as you need him and I owe everything to him - I am unsure if we should mention doctors here but I have to as he is an absolute angel (after trying every recommended doctor here in the UK) here is his details. hormonerestoration.com/ He is AMAZING. He also worked with a UK NHS Endo I was under to teach him !!!! it was nice to see
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