Still under investigation for thyroid issues, still have ‘mildly elevated thyroid hormones
have had thyroid ultrasound which showed inflammation
- experiencing symptoms of hyperthyroidism (I believe), extreme anxiety, weakness in legs, severe fatigue, severe depression and bad thoughts, high heart rate when standing or trying to move around, increased bowel movements weight loss,
- small diffuse goiter (according to private endo)
- swelling and occasional pain in thyroid area
- tried Carbimazole for a week on Feb but felt very suck
- tried PTU, for around 6 weeks but just taken off due to elevated liver enzymes
- now appear to have slightly elevated calcium?
Have seen endo at local NHS hosp- says levels aren’t high enough for me to experience such severe symptoms
please can anybody help? I am really really struggling - I feel so depressed and down. I cannot stop crying. I have thoughts of there being something seriously wrong with me & that I’m dying.
im so sorry if this is not appropriate on here - i am just absolutely desperate
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Yes - thank you - you appear to have Hashimoto's but prescribed the Anti Thyroid drugs Catrbimazole and PTU - before ever knowing if you actually had Graves - and I can't see any results nor a positive antibody reading confirming Graves Disease.
I think I just saw a mention of clinical depression - are you taking any medication for this there that might be impacting your current situation ?
I think others have mentioned here before that they think it is Hashimotos….
My GP would like me to re-start antidepressants. I did ok on 10mg citalopram for a couple of years but came off due to weight gain (which might not have actually been the ADs?!). Anyway I felt ok off the ADs - I feel that this is driven by the issues I’m having with my thyroid?
I’m awaiting TSI test result from private endo - should hopefully have this, this week.
NHS hospital were supposed to test TRAB but in don’t think it was ever done - and I’ve never seen any result.
I was referred to the NHS endo / hyperthyroid clinic. One very quick visit with an endo and then all follows ups are done via phone with a nurse (with bloods done the week before). At my follow up, I asked what my diagnosis is, told her how awful I’ve been feeling but she just said she couldn’t tell me the diagnosis
What a thing to say to a patient - and of course you have gone into overthinking everything :
Well there are no Graves antibody readings in these posts - and the private result should be back - maybe that needs chasing - as in my experience its that being in ' limbo ' that causes the anxiety to keep building.
It was suggested to me that I try Citalopram - some years post RAI thyroid ablation - it took the edge off a little, for a while, but the reality was I needed full spectrum thyroid hormone and not T4 monotherapy which was all my doctor would prescribe - so now I self medicate and am much improved.
I'm sorry but it still seems to be a bit of a waiting game - to rule in or out Graves -
I know it's easier said than done - but try and turn off - and be kind to yourself -
Vent all you like on here - we don't mind - and it's best let out than left in and boiling over - you are our priority .
thank you so much pennyannie your reply means a lot 😊 I’m glad to hear you’ve improved.
Definitely - I’ve gone into overthinking everything - I feel really really hopeless? But I’m not even sure why? I feel like I can’t see my future? This feeling descended on me really quickly…. It’s not like anything I’ve felt before.
Terrified of going even more hyper - equally terrified of hypo. Terrified of the meds now (a bit scary to be told to come off PTU because of high liver enzymes). Just feel terrified of everything?
I could say - get some distance - some perspective - rational thought - but it's all a bit pointless
as your thyroid hormones are all over the place and you're struggling with this crushing feeling that you can't run away from -
You are in a heightened state - with your brain in overdrive and your body likely totally exhausted and you can't think straight and get frustrated with your ' self ' :
I feel devastated and terrified I have an autoimmune disease - and to read all of the posts on here, it makes it seem so bleak.
I’d normally go for a walk - this is my favourite time of year. But my heart rate goes 150-160 just trying to walk in the garden. I love my job but I’m signed off sick and have been for 2 months.
I haven’t driven for nearly 2 months
I’m nearly 40 but I’ve felt so awful, I’ve ended up staying with my parents for the last month.
I just can’t see things getting any better at the minute
😔
I can sleep but wake up very early. I have had a few nights where I’ve not really slept much but I am usually able to get at least some most nights
Ok - tomorrow can you contact the private endo for the TSI results -
and contact the hospital endo as to the TRab test that was promised -
and your doctor to talk through how you are currently feeling and can they at least prescribe a beta blocker -
Propranolol actually also slows the conversion of T4 into T3 and this might just take the edge off these horrible symptoms while you wait for someone to tell you what is going on.
My GP has been very supportive and is chasing the hospital too - emailing them to ask for other tests too - I think she is concerned there could be something else going on due to how ill I’ve been feeling)
I can’t have a beta blocker due to asthma - albeit very mild asthma
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten.
Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
What sort of dose level were you prescribed for carbimazole & PTU? You may have been started on too high a dose. The sudden change in levels can be a shock to the systems. Starting on very low dose & working up can help with side effects.
Did it have any effect on lowering thyroid levels?
I expect doctors are used to see much higher FT4 levels, but to say it’s not high enough for symptoms is not true. They say this because they are uncertain how to treat you.
For one thing gradual elevations means you can be hyper for longer, which can take a toll too. Both physically & mentally, especially when doctors are not acting to help.
Have key nutrients been tested?
Do you currently take any supplements?
Was the ultrasound private or NHS? Recommend you obtain full report of scan. There’s often small details not fully explained.
I’ve had high calcium but the subsequent results were back range & therefore not raised as concern.
Sometimes calcium is raised & it’s not an issue, so try not to worry.
If you do have a further high calcium your doctors should test for Parathyroid hormone (PTH).
The parathyroid controls calcium levels. They are (4 tiny glands) located by thyroid - but have a separate function to thyroid.
When testing PTH it must be done on a site with lab facilities as sample has to be processed quickly.
Usually, calcium, PTH, vitamin D (possibly phosphate / & other bone profile) should be tested together.
If you wanted to read more about parathyroid causing high calcium here a link.
Hopefully it won’t be necessary to think about it, but being aware of the symptoms might be helpful.
I was prescribed 15mg carb - it seemed to give me very bad palpitations at night. It was awful - as soon as I’d close my eyes, I’d jolt awake with high heart rate and sweating. It was so strange. It also made me feel really sick like it had burned my stomach? It stopped as soon as I stopped taking it…..
Initially 100mg PTU then 200mg then 150mg
Id been taking a D3 with k2 supplement - a sublingual one? But not everyday and not excessively…. Also a sublingual methylfolate.
Vit d test yesterday:
Serum total 25-hydroxy vitamin D level
116 nmol/L [50.0 - 200.0];
B12 28 Feb:
VITAMIN B12
Serum vitamin B12 level 664 ng/L |187.0 - 883.01
Ferritin was fine in Feb but folate was a little low in the range
Ultrasound was NHS - I don’t seem to have access to it within my NHS app. The radiographer (sorry if that’s the wrong name) said he could see inflammation. When I’ve visited my GP after, they’ve been able to access it and said it read ‘inflammation’ and ‘thyroiditis’
yes, might be worth a try with the Carbi - it could make sense that 15mg was too high dose?
No, not consistent high t3 - hopefully you can see the attached with my levels over the past year?
I’d had Covid 3 times in around 6 months at the end of 2022/ beginning of 2023 & then started feeling ‘not quite right’ - TSH low in normal range where I think it had usually been around 1 ish whenever I’ve had it tested over the years previously….
It really does look continuous hyper but not as high as you usually see with Graves. If ultrasound scan shows existing autoimmune damage, you could have both Hashimoto’s & Graves. The thyroid is damaged but what remains is over stimulated. You tend to see fluctuations, but it’s a possibility.
I had similarly gradually elevated levels which was caused by toxic nodule (non autoimmune). Oddly it’s common to see disproportionately high FT3 with nodules, which you have with some of the results showing in range FT4 & over range FT3.
You have confirmed positive autoimmune & the ultrasound would have detected a nodule/s. Your thyroid was noted to be diffuse (which means the thyroid is the same & uniform throughout, not patchy).
It common to start on a higher dose of carbimazole to quickly lower levels then adjust dose down to keep stable in range levels. So not necessarily wrong to start on 15mg, but not right for you.
If levels are very high it can be more urgent to bring levels down. When levels are low doctors are always slow to increase levels, but the attitude is different if thyroid levels are high.
It’s all a bit of guesswork, some doctors are expert & can adjust to circumstances others don’t have a clue & try to treat everyone the same.
Some of us are just sensitive to changes in thyroid levels or the medication itself.
Low dose might take longer to bring down levels, but it would still be less time than taking nothing at all.
to read all of the posts on here, it makes it seem so bleak.
Don’t forget the most people who write posts are doing so at their low moments… people who are mis-treated by doctors and the entire healthcare system and in all the googling to take matters into our own hands, we find this forum.
So don’t forget that most people pop in with a question, and then at some point start to feel better, and that’s that. You won’t read many posts on here from those people!!!! But there are hundreds of thousands…. Millions??? Of people with thyroid issues who never give it a second thought!
What I will tell you is that for me and many others finding this form is the beginning of our journey to actually feel better.
local NHS hosp- says levels aren’t high enough for me to experience such severe symptoms
This is in contrast to peak medical gaslighting. all those doctors who make us feel like there’s so much mystery to why we could possibly feel so bad when they think they are doing such a good brilliant job treating us.
For me it took the past 9 months on this forum to undo the 9 months where I was under/suboptimally treated by my doctor. They know so little yet think they are God, usually mixed with a touch of actually not really caring how you feel.
You’ve got the best of the best input above.
Feeling better can take a year or so once you are on the right track. But at least you will have the knowledge and confidence that you are at least on your way!
Also - as for depression/anxiety … it’s so completely normal to feel hopeless with an autoimmune disease. BUT THE FEELING PASSES as two things happen at the same time 1) you empower yourself with knowledge. It really does help to understand what’s happening and to be able to advocate for yourself… and 2) as you figure out your optimal treatment the biochemistry causes of your depression will resolve.
I’m an eternal optimist and the inherent stress and wacky blood chemistry really took a toll on me. But that too is resolving.
Also, while you wait for all antibody results, I always find this chart useful in making the point that some are more or less indicative of either hashis and graves. But you can see they overlap as well.
Without the visual, I’m not even sure how anyone wouldn’t be totally confused by what they all mean.
Hi there how awful for you - how can anyone say that your levels don't correlate with the symptoms you are suffering - that IS what they should be looking at THE SYMPTOMS - the fact that you are suffering so much with anxiety and nasty thoughts - but as someone who has adrenal insufficiency it sounds like your adrenals are under pressure from the amount of thyroid hormone you are taking or just generally they are under pressure. The adrenals glands are the emotions - the feeling like you are 'dying' comes from the adrenal gland response - and anxiety and depression etc. - I don't know what other medication you are on - but if you can take some supplements to bump up the adrenals that would be good - but would need to know what you are also taking re medication.
Sorry I can't read all the posts to get this information - are you on T4 or T4/T3 - and you don't take anything else other than a steroid? Is that correct - you could try for the pain magnesium oil which is a spray to apply on the pain area ? I had severe back pain was almost wheelchair bound and had to find ways and means to get the pain under control as I couldn't take pain killers due to kidney issues. But a lot of the problems were thyroid hormone related I must add !
Agh that's a different and horrible ball game isn't it - hence the anxiety etc. - surely the medical profession should reduce your meds or doesn't it work like that ?
I am so sorry for all you are going through. Was there years ago, got the T-shirt. In response to the stress+distressed, have you thought of looking@natural ways to help? There are many natural sources available+wonder if they could be of help:psychcentral. com/depression/natural-remedies-for-depression
I remember many years ago before being diagnosed I found it v stressful not knowing what was going on+everything 'within range'. Mind you the ignorance in the medical profession is astounding. So, don't give up+don't give in+renew your mind to the truth available here+when necessary, ignore the claptrap from GPs+Endos who seem to be a bit like the guy pulling the levers behind the curtain in The Wizard of Oz ! A Fraud!
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
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Worthwhile pursuing? 
not sure what this means 
Blood test results 
