I went to yet another GP at our local surgery with new symptoms to add to my thyroid type symptoms to see if I could get some help.
She told the that the dead arm feeling that I now have at the top of my arm is down to age ..I'm only 56.
I thought that having high antibodies meant that you had Hashimotos. I ran off the i fo sheet on the NHS website statijg that if you had Hashimotos it can be treated with Levo. My GP said that her understanding of Hashimotos is having out of range TSH and high antibodies.
She then went on to say until NICE change the ranges for TSH there is nothing she can do for me. She said that she doubted that the ranges would be changed. I expect this would be down to funding as it would mean many sufferes would be able to get meds. S
She was sincere when she said she was so sorry she couldn't help me. Admirable but my symptoms are just getting worse.
Would ssomeone have a link to a medical page that clarifies the definition of Hashimotos?
Thank you.
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Having high thyroid peroxidase &/or high thyroglobulin antibodies means you have autoimmune thyroiditis (Hashimoto's). You can have normal TSH, FT4 and FT3 which is euthyroid Hashimoto's but eventually, often over many years, Hashimoto's will usually cause hypothyroidism.
Levothyroxine treats the hypothyroidism caused by Hashimoto's. It doesn't treat the Hashimoto's which has no cure or treatment. My doctors denied that euthyroid Hashimoto's caused symptoms and told me mine must be non-thyroidal. Symptoms resolved almost immediately after thyroidectomy for other reasons so I dispute that they were non-thyroidal.
Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.
While Levothyroxine may help someone who has TSH high in range or FT4 low in range I don't think it would have helped me as my TSH was 1.76 and FT4 and FT3 weren't low. Many of the symptoms I had seemed to be hyper so I think Levothyroxine may have made me feel over medicated.
Many thanks for the information, very helpful as usual. It sounds like you have been in the same difficult path that so many have had to endure. I think I'mmore hypo than hyper.
So basically I have have euthyroid Hashimotos and my GPs understanding was incorrect? Would Levo or NDT help the symptoms?
After much reading and research I am wondering if it is not my thyroid but something effecting the way my body coverts T4 to T3. Chris Kresser has an article on his page about this. MTFR gene missing or as Dr P thought the 5 dedionaise enzyme not functioning or hormonal imbalance
I have been in a strict gluten ftee diet for 3 months now. Dipped a bit at first then felt a bit better but have felt worse the past month. Having bad neck and head pains on the lef6 hand side. Awake very suddenly at night..mind is wired and no end of yoga breathing makes a bit od difference. Head behind ears is sensitive to the touch, band of pain around front if heas and eye sockets hurt. A few minutes after waking my body feels like a furnace, no sweating..skin feels cool. Weird dreams and invountaey jerks of my body. Mouth is dry, (I have been tested for diabetes, Graves,Lupus etc).
Subsides in the early morning, but shattered. Happening every night now. IIbobrufwn and paracetamol don't help much.
After posting my NHS thyroid test. I waz told my TSH was normal, but my T3 was on the low side. My thyroid urine test showed that I am not converting T4 to T3. As I know now bloodtests are a bit scattergun
After help from the forum and my health shop I have addressed all my vitamin and low gut enzymes. I have high cortisol levels all day, and I have read what damage they can do to your body. The GPs weren't interested. My blood pressure remains high despite meds..they keep saying they don't know why its high..well I do!
Not sure where to go next. I am still not sure what I have or what us causing my low T3. Tempted to buy some NDT and try a small dose. But I ubderstand trying to get the balance right is hard.
The new issues with my neck and head are really worrying me.
I feel your pain. Its hard. But please keep persisting. My belief and experience is the NHS will only treat you if you are acutely ill. You are clearly suffering from Hashi's symptoms and need help.
Two things - please insist your blood pressure is brought under control. A friend of mine was in the same situation - unexplained high blood pressure. She just had a stroke - at age 45. Within two days of being in the acute stroke ward the doctors had done enough investigation to hit on the right drug combination to bring down her blood pressure. If only they had been capable of doing that BEFORE she had the stroke.
Second - you have Hashi's. Ask for a referral to an endocrinologist. A GP is not qualified or experienced to deal with your problems. Insist on this. You are within your rights to see a specialist. If their hands are tied in prescribing under NHS, a good one will at least agree to monitoring you as you self-medicate.
If all else fails go see a private endocrinologist specialising in Thyroid issues. That is the only way I got taken seriously and got answers. Its not cheap, but your health is important.
I have tried other blood pressure mefs but had a bad reaction to them. .swelling eyes and face etc. Can't help thinking that if they got my T3 right my high antibodies and cortisol would lower and this would resolve my high blood pressure. Its only been the past few years that it has suddenly got high. I have a blood pressure monitor at home. My GP just asks me to take readings then says its high we might have to put me on Beta blockers. Im not keen on taking anything else to mask the real issue of why my blood pressure is high.
Asked my GP for an endo referral which she did. It was going to take months, so went via BUPA. The endo was sympathitic but quoted on more than a few occasions ,statistics on how many people in Bristol have high antibodies and how many have no symptoms and how many do. Wasted my time really as he also works at the local NHS hospital, so just following the NHS mantra on TSH results.
I have emailed Thyroid IK for a list of private consultants/doctors who understand these things. More expense I know. I have already spent over 1k on tests and seeing another thyroid doctor, (unfortunately he can't subscribe and is unwell).
We are living near Birmingham for a while, so a new GP surgery etc. Time has comr for me to finally get this sorted.
Dont know what I would have done without all the help and support of the forum members.
What were your NHS thyroid results and ranges? I can't see any recent results.
The only way to tell whether Levothyroxine or NDT will help your symptoms is to try it. Start low and increase gradually. 3-6 months trial should be long enough to demonstrate whether thyroid replacement is helping you or not.
Spire Clinic Tests for Endo..(I had been supplementing my B2w and low vits for a while before this test was taken)
June 2015
1.070 range 0.1 - 5.00 UIU/L
Free T4
16.89 pmo1/1 range (12 - 22)
Free T3 4.8 pmol1/1 range (3.1 - 6.8)
TSH 1.070 UIU/ml range (0.1 - 5.00)
I thought about buying some Levo or more likely NDT as it seems more natural. Just a bit concerned as I had read that you hsve to be careful about yiur heart etc. GP told me to be careful..Oh yeah..what about my body attacking itself!
Would taking thede be best for my lack of being able to convert my T4 into T3..which appears to be my issue?
Thyroid levels were euthyroid 2 years ago but because TPOab was positive for Hashimoto's thyroid levels aren't necessarily normal today. You ought to have annual thyroid tests because you will likely become hypothyroid.
Thanks. The GP and endo said they should be kept an eye on..but unless I ask nothing happens. They used to send me a letter to monitor it.
After seeing Dr P under his suggestion I took a 24 thyroid urine test. I know its not totally accurate, but blood tests aren't that accurate either from what I have learnt.
The results were. in Oct 2015.
T3 667L pmol/24h ... range (800 - 2,500). Dr P reported that my T3 was low probably due to conversion issues due to weak adrenals or an issue with the 5 deiodinase enzymes.
I dont think I will get the T3 and T4 tests on the NHS as I had to go to a private Endo to get them Also have to push for TPO antibody test. So looks like another private test.
Hard trying to afford all this. I am wondering if there is something else going on to cause the antibodies?
No good relying on GP practices to remind you to have annual testing. Ring up and make an appointment. Arrange the blood draw early in the morning when TSH is highest and fast (water only) because TSH drops after eating and drinking.
I can't interpret urine tests and my understanding is that they are not good for diagnosing hypothyroidism.
You can order private TSH, FT4 and FT3 test via thyroiduk.org.uk/tuk/testin... Medichecks have a special offer on until 24th.
Antibodies are caused by thyroid peroxidase or thyroglobulin spilling into the blood after a lymphocyte attack on the thyroid gland.
I will oder the full thyroid test including reverse T3 as I've never had this tested
I suppose my fear is that my TSH T4 and T3 with high antibodies still, and I'm back to square one.
It is interesting about the lymphocyte attack on the thyroid. I had an immune illness many years ago. .never identified, after having anti malarial tablets. And the recent research I have done now shows that these can effect the thyroid gland. And another more recent immune attack after a blood infection after an illness. Ended up having to have steroid, methotrexate and anti inflamatories for a year and a half.
All my aches and pains and the then more milder thyroid symptoms started after taking the anti malaria tablets.
I will post my results. Thank you for adding to my knowledge of Hashis etc.
High rT3 is usually caused when taking high doses of Levothyroxine which aren't converted to T3. I wouldn't bother with rT3 and you know antibodies are high so TSH, FT4 and FT3 is really all you need.
I have used the MediCheck service for my TSH and antibodies test. I hadn't had both antibodies tested so thought it might be worth doing. Very good service indeed. I am also awaiting the results of the venous adrenal test, as once again I have never had these tested.
As I suspected my TSH is still in range, despite now suffering new symptoms in addition to the existing ones. My tests results reviewed by their doctor and comments are below:
Your thyroid peroxidase antibodies are elevated. This antibody is commonly associated with autoimmune thyroid disease. It is frequently seen in conditions such as Hashimoto’s disease (where the thyroid becomes underactive) but confusingly can also be seen in Grave’s disease (where the thyroid becomes overactive).
Your thyroglobulin antibodies are positive. This can be associated with autoimmune thyroid disease and in particular Hashimoto’s disease.
The presence of thyroid autoantibodies increases the likelihood that your thyroid hormones may become abnormal in the future.
Your thyroid function is presently normal but we would suggest repeating this in 6 monthly intervals.
Thyroid results are euthyroid (normal) and thyroid antibodies confirm autoimmune thyroiditis (Hashimoto's). NHS won't make a diagnosis of hypothyroidism until either TSH is over range or FT4 below range so if you do want to try thyroid replacement you will have to self medicate. Because your thyroid hormone is not low I don't know that taking Levothyroxine or NDT will improve symptoms.
There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it eventually causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies. Supplementing 200mcg selenium is good thyroid support.
Currently you have euthyroid Hashimoto's which most GPs and endos will probably tell you don't cause symptoms. Having suffered this myself and become extremely unwell I would say doctors are wrong because my symptoms improved almost immedicately after I had a thyroidectomy.
I'm sure she could help you if she wanted to. My GP gave me a trial of Levo even though the Endo said I didn't have a thyroid problem. What about your symptoms! That b***** TSH! Sorry but it makes me cross!
Third GP at practice I've seen. They all say the same. I have very high non specific high blood pressure, high cortisol levels all day, malabsorbtion issue's, antibodies that are 1000+, loads of symptoms, yet they are happy for me to continue like this. Adresssing most of these with help from the forum and my local health shop.
I said to her if I had a drug or alcohol problem or if I smoked then I could get help.
My NHS TSH test is fine. After posting my ranges on the forum I was told my T3 was on the low side. This was bourne out by a urine thyroid test which showed that I am not coverting my T3.
Dr P also though that this was the issue. Possibly down t lack of the 5 dedionaise enzyme. But he as beem ill so no follow up. And I am researching this.
Researching the MTFR gene issue etc now.
It is one of the biggest health cover ups ever. Trust Me I'm A Doctor did a programme on it recently.
Im thinking of contacting them. But drained with writing and researching everything and trying to justify it all to GPs. And the last GP gave me the definate impression that she has to adhere to the practice and NHS ruling on treatment.
"If doctors could treat people as soon as they know they have antibodies, the full blown hypothyroidism could be averted. If you start to have symptoms of thyroid disease, get checked for antibodies and if they are positive, take this report with you to your GP. Wouldn’t it be great if the doctors listened to this study?"
Yes it would be wonderful. But like much on the NHS everything is left until a point of no return. This costs lives, unnecessary pain and ultimately more costs to the NHS.
We are staying near Birmingham for a whiie. Its a shame Dr Lowe was still not with us. Trying to find an NHS GP to help is hard. I am willing to buy NDT, I need advice if this will help my low T3 and dosage, but I don't think most GPs would know what to do anyway.
I have antibodies of 1000+, but even the private endo I saw just quoted statistics about how high antibodies doesn't effect everyone. Told him they were hurting me.
GPs have seen all my tests, yet stick by the TSH range mantra.
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