My GP has finally acknowledged that all the symptoms I've experienced over the last 2 years are due to the antibodies (anti-TPO) attacking my thyroid (currently over 1000). We did have a very long talk about it, 45 minutes in fact!
The bad news is .....
Although my GP agrees that I have in fact got autoimmune thyroiditis he will not officially diagnose it, write it on my notes or treat me, he says it hard to prove without a goitre or messed up lab results (he still insists that TSH levels are the ones to watch, he said if he treats me then it will mess up the TSH results!).
So I have a few questions as I'm confused now (which isn't that difficult at the moment!!)
Is autoimmune thyroiditis (Hashimoto's) only autoimmune thyroiditis in the presence of a goitre or nodules along with elevated anti-TPO's? How does one get this officially diagnosed without a goitre?
If the doctors feel your neck, can they feel nodules on your thyroid or even slight inflammation of the thyroid? My doctor had a good feel of my neck because of the swelling I've developed on the right side of my neck from my clavicle right up to my ear (over a month now, very uncomfortable!) he said he can't feel anything lumpy so it's muscular. Do I insist on an ultrasound to make sure or is feeling the neck more than enough?
I know from reading other posts that people can get a feeling of a lump in the throat/food getting stuck and so on but is this a permanent symptom or something that comes and goes? mine comes and goes.
Thanks in advance for any clarification.
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Angel-23
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So what is your tsh level? The doctor might be waiting till it reaches 10,,,, Whereas he should really be giving you meds long before then.
You need to ask for copies of all your blood test results, specifically tsh, free t3 and free t4. ( under the terms othe 1998 data protection act, we are entitled to the results.)
Not everyone has a swollen neck or a goitre. Hashimotos is proven by the existence of antibodies.
Your doctor appears to be fairly clueless...... Suggest you give him a coy of the pulse article which you can get from Louise Warville, ( admin)....
I have had copies of my results with ranges which I put on one of my previous posts they are all within the normal ranges, back in January
January 2015 my results were
TSH - 0.42 mlu/L - range 0.27 - 4.20
FT3 - 5.00 pmol/L - range 3.9 - 6.7
FT4 - 19.7 pmol/L - range 12.7 - 20.8
Anti-TPO - >1000 IU/mL - range <100
All ok, but have noticed (because I have had quite a few blood tests done) that when my TSH is below 1 I feel ok (back in January I felt ok) but when it's above 1 I feel awful, I did state that to the doctor and I also said how does anyone know that the levels I'm showing are right for me, as an individual person! he didn't have an answer for that!!
My next blood test is in July and he has agreed to do TSH, T4 and T3 but I will probably feel ok again by then!!
Angel, I had similar problems with elevated antibodies (nowhere near as high as yours) but euthyroid bloods. Dr. Toft recommends treatment to 'nip things in the bud' in the presence of antibodies.
Suppressive doses of Levothyroxine can reduce Hashi flares and antibodies but it is difficult to see how one can tolerate this when bloods are normal without feeling very overmedicated which I can assure you is most unpleasant.
I would ask your GP to refer you for an ultrasound to check whether your neck is swollen due to swollen thyroid gland or muscular swelling. Hashimoto's doesn't necessarily present with goitre or swelling but if it does it may be behind the thyroid gland and not easily detected by palpation.
You might also try a gluten-free diet which has helped Hashi patients reduce Hashi flares and antibodies.
Yeah I've shown my doctor the document where Dr Toft recommends to "nip things in the bud" but makes no difference and I have adopted a gluten free diet. My bloods are well within the range so like I said in a previous post I can sort of understand why my doctor is reluctant to give me meds.
I did suggest having my bloods done again when I'm feeling at my worst but my doctor said that it is impossible for blood levels TSH, T3's and T4's to fluctuate that much. Do you know if this is correct?
The highest my TSH has been is 1.12 mIu/L (which is quite low) but I didn't feel right at this time. I keep thinking to myself if I feel bad with TSH of 1.12 what am I going to feel like when it reaches the top end of the scale, I'm not going to be able to function at all, I find it hard sometimes now!!!
I will ask the doctor to refer me for an ultrasound for piece of mind if nothing else!
Angel, your results are actually very good with low TSH and both FT4 and FT3 high in range and it would be very unusual to have hypothyroid symptoms with those levels. Bloods should be monitored every 6-12 months because autoimmune attacks will eventually make your thyroid fail.
You should also check that your ferritin, vitamin D, B12 and folate are optimal as low levels/deficiency cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms.
TSH fluctuates according to circadian rhythms and also fluctuates according to seasons, being higher in winter and lower in summer. The daily fluctuation is considerable. See the graph in this link healthunlocked.com/thyroidu...
Yes they are good and I did feel ok with no symptoms when I had those blood tests done back in January which I said to the doctor at the time. I had a few months of feeling pretty good!!
I started feeling bad again end Feb / beginning of March time, these (below) were taken when I started going down hill again. There is a difference but not significant and looking at the chart possibly just taken at a different time of day!
TSH - 1.12 mIU/L - range 0.27 - 4.2
FT4 - 16.8 pmol/l - range 12.0 - 22.0
My symptoms over the past few months have progressively got worse and the the latest is the swelling of my neck down the right side with swelling under the chin and a feeling of something stuck in my throat and of course the tiredness and lightheadedness!
I've had all other blood tests you mentioned done and apart from folate and vitamin D everything is somewhere between mid to high in range. I'm addressing the folate and taking vitamin D supplements.
This is why I wondered whether having the blood tests redone when I'm feeling at my worst would make any difference to the results.
Thanks for taking the time to help it's very much appreciated.
Angel, I'm not sure it would help. I doubt the bloods fluctuate that much even in the midst of a Hashi attack. The dropping of T3 and T4 is usually gradual and that's what causes TSH to rise. Your GP seems sympathetic though so it may be worth asking for TFT when you do feel awful.
As I said earlier, I do think a scan of your throat and neck should be done to check out the swelling.
Angel, I reckon it has to be the antibodies but other than diet and lifestyle changes which don't help everyone I'm really not sure what you can do about them
Some people can have normal labs and have symptoms because hashi's is an autoimmune disease and this causes symptoms in itself. My TSH was the only one my idiot doctor did and it totally changed in a few months time. I also suddenly gained 30 lbs, in 3 weeks and the doctor refused to retest my TSH. I had to go on the hunt for a new doctor. I know better now. I can't find the link, but pubmed says studies show: "Women with Hashimoto’s thyroiditis (HT) also with positive anti-TPO titer are experience to a significantly higher prevalence of general health symptoms as compared to those without HT. .
If your Anti-TPO is over 1000 you clearly have Hashimotos, 1. Demand to be referred to an endocrinologist, 2. get on Levothyroxine asap. Do you have painful joints, burning muscles, hair loss, dry eyes, constipation, brain fog, extreme fatigue? I cant get over how much of our time is wasted and quality of life is trashed due to GPs. This has happened to me. Its hard to argue with doctors especially when you're so tired but you must. Ask for copies of your results so your current GP knows that their diagnosis will be looked at and judged by their colleagues. I wish you the best of luck.
Yes I have all those symptoms, feel awful really, I was referred to endocrinologist and they did some tests and then discharged me saying that there is nothing wrong and the symptoms are in my head, they said that having anti-TPO's over 1000 means nothing and wouldn't cause the symptoms I'm constantly complaining about.
My doctor has agreed to do an ultrasound of my whole neck now but this is only because there is visible swelling from my collar bone right up to my ear on my right side.
Since your presenting every symptom ask to try levothyroxine. Ask your GP if they are familiar with the fact many many specialists believe the current "normal ranges" are completely outdated. Treat the person not the test range! Best of luck
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