I am new to this board, so please bear with me! I am just curious what the prognosis is for people with Hashmitos condition? My doc informed me today that it will worsen as the body continues to attack the thyroid, but not to worry as it's not an awful condition to have and he "wouldn't be worried if I had it " hmm. It's something I have had on and off for a few years now, since the age of 24 and I am now 28. Due to my relative young age I just a bit concerned how much worse this will get ! I am currently on 75mg of levothyroxine and still experience a few mild symptoms, but feel better on the whole. Will I have to be increasing my mess for evermore now? By the time in 50 in surely going to be on about 200mg !! Sorry to go on, I'm just rather confused and uncertain about it all and the reason I went to the docs today was to ask to see a consultant about all of this again, but was told its treatable and not to worry.
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Mandi1987
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I'm newly diagnosed myself (I'm 44) I've had symptoms for around 6/7 years, but was told it wasn't thyroid. Since the diagnosis I've learnt most about the illness myself (still learning) but as for the GP and Endo, they explain nothing, and I've been told to watch and wait, they wont treat me until I'm hypo constantly. I don't even think they see Hashis as a big deal, and I feel as if I'm made to feel that I'm some kind of hypochondriac, but I can honestly say, I am going downhill fast, I've never felt so ill in my life, I'm seriously considering self medicating.
As far as most medics are concerned: Hashi's doesn't exist i.e. it's not an illness therefore doesn't require treatment. I was diagnosed hypo first and was OK on levo for a bout 4 years. Then things went downhill in a big way and I asked for antibody test which came back well above the normal range. The local endo said no treatment was needed. I thought otherwise and read about Hashi's and going gluten free. After a year on GF diet my TPO levels were almost at zero. GP somewhat bemused!! I feel quite a bit better!! and am still on my 100mcg levo + various supplements such as B12, Vit D and K, selenium etc. The information and help from people on this site has been invaluable. A happy New Year and better health to everyone.
I don't understand this as i was told by my GP that they don't re-test TPO antibodies, as once they are there they are always going to be there. Mine were over 1000 several years ago, but they still don't give me medication as TSH and T4 are always within range - I'm 57 and think I have had this since my early 20s, but we all know how difficult it is to get a diagnosis. I was over 50 before anyone (my rheumatologist) thought to test for TPO antibodies, even though GPs had at various times tested for T4. I just hope that there will be a breakthrough in GP education on thyroid issues.
Jemma - it is because they do NOT understand auto-immunity or how to deal with it.
Please post your latest thyroid blood test results with ranges and people will be here to help you. A new post would be best. When you have anti-bodies that high - your thyroid needs support. All my TFT's were in range but my anti-bodies were HIGH and so Hashimotos was diagnosed and treatment began back in 2005....
Thanks to both of you for your replies. I have actually posted my results here and kind people have commented that they are too low for me to feel well - and that's exactly how I feel, with nearly all of the symptoms, but nothing really chronic - at the moment I have the usual joint pain (+ some swelling) and tiredness, and tingling/burning feet. It affects my life all the time and has done for a very long time - I have amended my career to something I can do sitting down, for example. But the docs think there is nothing wrong so long as the results are within range - "they are fine". My last results on 18/08/2015were TSH 2.43, T4 15.8, FT3 4.14 (ranges 0.4-4.5, 10.0-24, 3.1-6.8 respectively). I am seeing a rheumatologist who for 10 months prescribed hydroxychloroquine but then took me off it as she didn't think it was doing my fingers any good. I have a diagnosis of possible psoriatic arthritis from her, but she doesn't want to label me. I recently talked to my (new) GP to ask if I could use the practice nurse to take a blood sample so I could send it off for a private FT3 test (they don't do these on the NHS as we know). I find it really difficult to squeeze enough blood out for the finger prick test. She said that I don't really need it as T4 is the active hormone used in the body, and the level of that is "fine". Am I wrong, though, in thinking that it is FT3 which is used by the cells in the body and that Thyroid Peroxidase is the enzyme needed to convert T4 to T3? And this enzyme is what the TPO antibodies are attacking? Why then wouldn't it be a good idea to keep an eye on FT3? I know the GPs have the medical background and presumably knowledge, so am reluctant to question her on this.
However, going gluten free does not reduce everyone's antibodies. I went gluten free (very strictly) years before the test that showed my antibodies were high - at a level only experienced by one in 200 of the population.
crimple what make up the "etc" supplements? Just curious as thinking of buying some more supplements.
Hello Mandi,
Welcome to our forum and sorry to hear of your health problems.
It is not known what triggers the autoimmune response to attack our own thyroid tissues but key thoughts are a reaction to an invading germ, virus, bacteria or certain foods, toxins, trauma but also holding a genetically predisposition to it developing anyway.
Hashimoto’s is an autoimmune condition where the formation of thyroid peroxidase (TPO) and/or thyroglobulin antibodies (TGAb) attack the thyroid gland. Over weeks, months or even years these antibodies may cause inflammation and nodules and eventually deplete the thyroid gland of hormone which requires replacing with meds.
The most common form of treatment is synthetic thyroid hormone Levothyroxine.
During the attacks you may feel hypo one day and hyper the next as stored amounts of hormone is dumped into the blood stream making you feel very unwell. This can make your TSH blood test results vary enormously.
Adrenal fatigue and gut problems are common as thyroid disorders are insidious and not usually diagnosed until the patient feels quite unwell and so body damage may have already occurred. If a thyroid high antibody count is not managed, the body can become stuck in a chronic state of immune system overload, adrenal insufficiency, gut dysbiosis, impaired digestion, inflammation, and thyroid hormone release abnormalities. Medicating thyroid hormone replacement should help to suppress Hashimoto attacks and so relieve symptoms.
Having one auto immune disease may predispose you to others. Common ones found together with Hashimotos are Rheumatoid Arthritis, Pernicious Anaemia and Celiac Disease.
Because the immune system is in a heightened state, many experience an over reaction to gluten ( and dairy) which can cause autoimmune damage to the intestines resulting in poor absorption of nutrients. Many members (including myself) have found a gluten free diet beneficial.
Supplementing selenium has been shown to reduce TPOAb ( in some people) and also aid the T4-T3 conversion of thyroid hormone.
Your meds will not need to raise & raise but are usually increased until your blood test results show within range and (hopefully) symptoms have been alleviated. Unfortunately many doctors cautiously leave us a little short of thyroid hormone meds, not understanding the immune response side of it.
If you post recent thyroid hormone blood test results complete with ranges ( numbers in brackets) members will comment.
This following link explains the importance of vitamins and where they may be obtained. This forum is supported by the charity ThyroidUK. You do not have to join the charity to benefit from this forum but by doing so you will be supporting the charity and also entitled to various discounts when buying supplements, as detailed in the link below.
Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
hi, mandi. i know this might sound strange, but i wanted to mention that you are actually very lucky to get a diagnosis so young! many of us had to wait decades before we finally found out what was wrong with us, and that long wait can make treatment even more challenging when it finally does come (for some--not for everyone). i didn't get a proper diagnosis until i was in my early forties, and would just kill to have been diagnosed and put on NDT back in my 20s (or better yet, in childhood). life would have been so much easier! so, while i know that getting a diagnosis of anything, let alone an autoimmune condition, sucks, bear in mind that it's actually a great thing to have found this out, and that hashi's is (unfortunately) super common, massively under-diagnosed / often missed, and definitely treatable with the right meds and a good doctor who knows how to read blood labs and isn't afraid to dose properly. (or, as is the case for some of us, with proper self-treatment after a multitude of doctors fail us.)
also, at the risk of repeating what others have said: once you're on a good / thyroid-suppressive dose of medicine, it doesn't seem to make too much of a difference whether the thyroid keeps shrinking or not. while this can cause problems for some (who need frequent medication changes or can't quite get stable on anything), for most people things are much smoother, even as the thyroid is further destroyed. one of my (better) doctors actually suggested that i would find things easier once my thyroid was mostly gone (and it's on its way to that now).
I agree with your comment above about having an early diagnosis. I was 59 when diagnosed with Hashimotos and now 11 years later I am just about getting it right - I think
My Endo here in Crete suspected I had had it most of my life. Well that would explain a great deal !
Lots of good books and websites where you can sign up for Newsletters to stay well informed as they learn more and more about auto-immunity. It is becoming so common but still GP's seem to run a mile from understanding it all. But then they are not experts and should refer people on to..... ? Yes that is the problem - the NHS needs Specialists in Auto-immune conditions instead of these clinics for various things that possibly have auto-immunity as the ROOT cause.
It is commonly understood that auto-immune issues start with the health of the gut. I agree with this having arrived at this through experience. I was diagnosed with Crohns at 27 - over 40 years ago - after Gut TB.
Izabella Wentz is a good place to start - she has a website and her book - Hashimotos - The Root Cause is an informative read. Also she sends Newsletters.
Please do not be concerned about the future - that will add to your stress. You have a diagnosis - so if you follow the advice from so many here you will be fine. It really does help to take supplements to support your body in spite of what you may hear to the contrary. Be in tune with your body and listen to it carefully.
Asking to see a Consultant rarely brings results. They seem in the dark ages when it comes to auto-immunity. Am afraid it is left to Functional Medical practitioners - like they have mostly in the US - that can look at the whole body. So my advice would be to read as much as you can and keep asking questions here on this forum.
Wow. Thanks so, so much for all the kind responses. You lot have given me more info than any consultant / doctor I have encountered on the subject. Thank you, so so much!
I am currently taking lots of supplements and have already tried a gluten free diet but only managed a week or two! If it really is helpful and many of you do it I would co wider eliminating it completely? In my early twenties I was also diagnosed with chronic ideopathic neutropenia which has now gone, but as its auto immune I was aware I may be susceptible to other conditions in this are. So I'm not surprised I have thyroid issues! I will check out the news letters you describe and will get a hold of my next thyroid lab results next time I get a blood test. I'm sure the doc didn't seem to concerned by then yesterday though when he was looking into it for me. As I'm only on a "modest" amount of meds (as he put it) it's unlikely my levels are too bad?
One last question, sorry!, my thyroid condition went away after the birth of my daughter and returned again when I got pregnant with my son. I knew it had returned and asked the doc to check it out for me. I was right and thankfully put on meds promptly. What confuses is me, is how did my thyroid go back to normal (seemingly?) and then set private again? Anyone any experience of this? Also my mum wants me to pay private (can't really afford it!) to get some more answers as she worried. Have any of you done this? Is it even worth it!? I feel fellow sufferers know much more than the medics!
When you have Hashimotos it is possible to have 'in range' results as you can swing from Hyper to Hypo. When I was diagnosed here in Crete - the TSH - FT4 - FT3 were all in range. The scan revealing nodes and high anti-bodies was the confirmation for Hashimotos.
It also depends what they tested that was supposedly normal. If it was just the TSH then that is not good enough. They should have also tested the FT4 and the FT3 - which they seem loathe to do....costs ? Maybe obtain copies of your results each time you have tests. This way you can post them here for advice/discussion. It is your legal right to have copies for your own records. You could ask for back copies.
I can understand your Mum being concerned - however sadly unless you find an Endocrinologist who specialises in Thyroid you could be disappointed. Thyroid UK do have a list of Thyroid Friendly Endos/Docs. If you want to go down that route then ask for referrals in a new post and people will send you details.
I have two daughters with thyroid issues - one had Thyroid cancer - and listening/reading of their experiences I am not too impressed with Endos. They mostly seem to specialise in diabetes.
You will learn so much from this forum - go towards the top of this page and on the right you will see the heading Topics - scroll down to Hashimotos where you will find 1500 relevant posts
Have a blood test to rule celiac disease in or out before starting on a gluten free diet. Aroun 6 per cent of those with Hashi's are also celiac. The medical advice is to do this because (a) if you have celiac other members of your family should be tested too (b) you may take the diet more seriously, and you will be given medical supervision and help (c) if you go off gluten and discover that you feel much better off it, perhaps because you are gluten sensitive, not celiac, you will almost certainly not want to go back onto a gluten full diet in order to check whether you are actually celiac or not. Because going around bloated up to a six month pregnancy and feeling tired and with stomach pains is horrible! Once you've been off gluten for a bit, if you react to it, your tolerance goes, and it is much worse when you eat it.
Thanks. Been tested for Celiac after reading their is a connection between thyroid issues and celiac disease. I'm thankfully not celiac, but I have read a lot on the leaky gut etc and feel I may try gluten free again at some point.
If you can find an optimum dose so that you feel better, you needn't be worried that it will get worse. You just need to keep an eye on symptoms. There are far worse Autoimmune disorders which you can have.
There are a lot of websites that will give you a symptom list for hypo and hyperthyroidism. You can match those symptoms to your hashi attacks. Endocrinologists are the gold standard for thyroid. Allergy/immunology may also b helpful. I was diagnosed this year when my thyroid failed, but I have been symptomatic for around 30 years. I found that without treatment things worsened slowly over time, but with treatment I am improving. I also have acute swelling of gut, face, eyes, limbs... But the immunologist is helping very much with that on the autoimmune side.
We have direct to consumer labs here in the US and some are very cheap. It enabled me to thoroughly check everything I thought needed to be checked and found complement, b and t cell values were low, igg deficient, and ige elevated. All of these are related to immune function. It is another avenue for those who are stuck, not getting well, even with hashi treatment.
After a 10 year battle with an adrenal gland issue, I finally got it removed and began to normalize. Few months later started feeling this weird sense to stretch excessively esp in the morning. I'd wake up with tingly hands and arms, aches in my shoulders, I felt fatigued, brain fog, really sleepy and suddenly got Carpal Tunnel Syndrome. I pin-pointed the problem as being thyroid related, my Endo confirmed and said Congratulations you have Hashimoto's, saying it as if it's no big deal. Here's 50mcg of Levo, take one every morning, see you in 6 weeks. I was not happy, my husband asked questions. But all the answers were short as if no big deal. I'm in Johns Hopkins, folks, a world-renowned hospital center, sitting with a top endo. He said it's life long illness and I'd be on medication for life. My thyroid is being destroyed slowly by antibodies. So I asked if there was something to get rid of antibodies, no. I am now enslaved to big pharma w/o any ideas of improvement from mainstream medicine. I just turned 50, so shall I go the next decade fighting doctors about how to get well again? Yes, another battle ahead. Just turn on the internet and there are millions in the same boat. The internet helped me once before, and it'll help me again. This forum is a wonderful find, extremely helpful, the people here are understanding and knowledgable beyond your typical mainstream doctor. You've found a great source besides T4 and a TSH test. Best advice I can give, since i'm a newbie, is to find another doctor that isn't a "Levothyroxine Only" dispenser. They're out there, you just have to look deeper than mainstream. I found a few by asking the pharmacy if they could tell me of any doctors that Rx T3 or Armour. I got that advice here and it helped. Yeah, you are young and I wish you the best in getting yourself well. You've already made a step in the right direction by finding this discussion board.
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What else can it be? :(
What do you think of my Endo's comments!!
New results and an update - Vit D, early Lyme Disease and what looks like vitiligo
