I have just seen the NHS Endo who said he cannot explain any of my symptoms based on my normal blood tests.
My friend just asked me, could I have thyroiditis? I hadn’t heard of this before and it seems there are different types.
Had a quick google and I think my symptoms match - could that be why I’m suddenly feeling so poorly in general and having hyper/hypo symptoms? Particularly, new symptoms of sore /tender neck and headache, sore throat and hoarseness?
Can you develop acute/sub acute thyroiditis when you are already on levo?
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Runcmc
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Can you share if you have ever had thyroid antibody tests - such as TGab, TPOab?
And what is the current dose of Levo you are on, and for how long, and what is your latest TSH, FT4, and FT3.
And latest ferritin, b12, folate and d3.
I read your profile and my ❤️ breaks for you and the challenges you’ve had. Unfortunately many of us here have experienced different variations of medical professionals having a complete blind spot for diagnosing and treating thyroid issues.
There’s a lot you will learn on the replies to this post.
But we need to see your latest blood test results to get specific.
Unfortunately it’s very likely the NHS Endo has no clue about how to treat hypothyroidism. Increasingly and depressingly common—they tend to be glorified diabetes specialists.
Your blood test results aren’t normal. You are currently undermedicated for your hypothyroid condition and your ferritin levels are in your boots. With your results I’d feel very poorly indeed—many of us here would.
It may feel counterintuitive but slowly raising your levothyroxine dose is probably the thing that’s going to help the most.
Now that I look at your post in context of your recent posts, I think it’s largely semantics.
1) thyroiditis is a term that refers to inflammation of the thyroid gland
2) this thyroiditis then can lead to hypothyroidism - which is an underactive thyroid (you have that too)
3) but as you note -even googling it quickly brings up that there are different causes for that inflammation. For example - autoimmune disease (this includes Hashimotos disease), viral infections ( this is the definition of “Sub-acute”), some medications, or even physical trauma to the thyroid or even the pituitary.
As Jazz points out - you have Hashimotos, known by your elevated antibody test results, which shows your thyroiditis is autoimmune in cause.
4) Therefore the main cause of your underactive thyroid is autoimmune - not sub-acute. This is important because autoimmune disease is a one way street. We will always have it. Subacute would be temporary. You don’t have that.
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So simply yes, you do have thyroiditis, the cause is an autoimmune disease, and the impact is that your thyroid is incapable of producing enough thyroid hormone for you to feel functional.
And so you are on thyroid hormone replacement and will be for the rest of your life. By the way - we all are as well : )
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Many of your symptoms (including your “new” ones) are very familar to us. Your case does have some extreme aspects but your previous posts give all the knowledge around it all. You have great replies in those posts.
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What you should do
- read and re-read your prior posts - there are so many answers for your confusion and so much guidance. We are all different but also in many ways we are so much the same. Let it all sink in and take it step at a time.
- take action on optimizing your TSH, FT4, FT3 (likely with more Levo) like the reply I linked above for starters.
- actively manage your ferritin, b12, folate and d3. Each one has to be managed deliberately and separately .
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Lean on this forum if you need anything at all. We have all been where you are in some way or another, and there are so many of us who credit this forum with giving us our lives back or at least gives us immediate hope.
None of us are doctors but you won’t find a smarter bunch.
Thanks so much for the detailed reply. I really, really appreciate the time people spend trying to help on here. I have read and re read all the replies on my previous posts and am trying to be as pro active as I can.
The thing is, I just can’t understand why I feel so unwell ONLY since starting treatment. I never felt this bad before and my TSH, T4 are all much much better than they were but I feel utterly dreadful, scared and emotional. I’d rather go back to where I was. I can’t make it make sense and my symptoms are a mix. I would say I feel over medicated and toxic. I’m scared to take any more levo and I know that goes against all the good advice on here but I just think something isn’t right.
It’s horrible when you get to that point. Many of us have—but please take heart that this forum has many members who’ve been on a similar journey and through educating themselves about the condition have managed to find their way back to health.
One of the things that’s most difficult to wrap your head around is that doctors, on whom we should be able to rely, usually know next to nothing about how to treat thyroid disorders. They have maybe half an hour on the thyroid at medical school, where they’re told that in the case of hypothyroidism TSH is all that matters, that enough levothyroxine to put the TSH back into range is the goal.
But there are some big issues with that. First of all, the laboratory reference range for TSH is too wide. Once your TSH goes over 3, you’re likely to start experiencing significant hypo symptoms. Unfortunately, many doctors still describe that as “sub-clinical” even in the presence of thyroid antibodies, which is ridiculous and technically incorrect.
By the time most of us have our hypothyroidism officially recognised, we’ll have been unwell with mystery symptoms for years—many of them not officially documented as being related to hypothyroidism. Childbirth tends to be a trigger point for those of us with children, for others, it kicks in at perimenopause. And they range from anxiety to aches and pains in all sorts of places. Untreated hypothyroidism leads to nutritional deficiencies because our guts don’t process the food we eat properly. Those deficiencies lead to secondary symptoms—weird sensations in hands and feet, numbness, pins and needles (often related to Vit B deficiencies). The aches and pains and anxiety can be low Vitamin D related.
But all of it started with our thyroids no longer doing what they used to do. For many with Hashimoto’s, they also go through a period of having hyperthyroidism, which means they got used to having way more energy. Really common for people to say, “I don’t understand it, I used to go running every day, how can this be happening??”
Because doctors don’t always recognise that hypothyroidism starts gradually, with the body tending to compensate for the deficit by raising cortisol levels over a period of many years, by the time it’s recognised that we do have it, we’re already very unwell. And then it can be more difficult to fix. Our bodies are so used to not having the thyroid hormones, they struggle to know what to do with the levothyroxine that we put into them. That can feel like being overmedicated but it doesn’t mean that’s what’s actually happening.
When this happens, some find they need levothyroxine raises to be low and slow. If that means raising by adding an additional 25mcg on just one day of the week, then a couple of weeks later making that two days of the week, then that’s the way it might have to be. But you will get there.
Sadly, this isn’t going to fix itself—as FallingInReverse said earlier, you’re going to need to take thyroid hormone replacement for life now. It’s horrible feeling so ill particularly when doctors make you feel as though this condition shouldn’t be causing these symptoms. They’re wrong—this forum is littered with people who’ve been on a very similar journey. This forum is the busiest on HealthUnlocked because we don’t get the support from health professionals that we should.
Jazzw thanks for being so kind. It’s been an intense 4 weeks. I think it’s the fear of the unknown that’s really hard to deal with. No idea how long it might take to find some kind of normal again and as I’m sure everyone here knows, that’s so tough psychologically, it’s hard to be rational and objective about things when you feel so physically and mentally unwell. The Endo said to me at the end of the appointment yesterday “‘I cannot explain your symptoms and have never heard of anyone becoming more unwell on treatment, do you think it could be psychological?”. Even if he thinks is IS all in my head, how can the answer be to do nothing? Surely he should refer me for a psych evaluation at the very least. I’ve actually decided to self refer for some taking therapy on the NHS to help deal with coming to terms with having this for life. It’s a shock.
The Endo said to me at the end of the appointment yesterday “‘I cannot explain your symptoms and have never heard of anyone becoming more unwell on treatment…”
He’s either incompetent, inexperienced or an absolute a*se then. Because we see it here all the time.
It’s almost certainly not psychological—though it can definitely help to have someone to talk to, especially when friends and family start running out of sympathy.
Gosh Runcmc, I've just read your profile and I'm so sorry this has happened to you. I really relate to alot of what you've been through. After I started levo (10 years too bloody late) I really struggled with feeling worse. I'd been living on cortisol and adrenaline for a long time and my anxiety was through the roof. I couldn't drive anymore or go in any shops!
In Feb this year I had what I can only describe as a nervous breakdown. I couldn't walk or do anything for myself. I showered sitting down for months.
My cortisol was /is low. My mental health was in tatters.
I started trying to increase my dose from 75 to 100mcg and it was too hard, my anxiety spiralled. I started again, lower and slower, and it wasn't wast but now I'm at 115mcg and (apart from the last few weeks with a virus) my anxiety and mental health have drastically improved. I feel calm in a way I haven't for years. I still don't have much energy but I'm taking it that my adrenals are in recovery for now.
I really hope you can find a way to feel better. It's the most awful thing.
Acupuncture helped me alot in the really dark days x
Runcmc When posts get this long, I hope this doesn’t get lost and that more replies are not overwhelming you.
Quick question. Not sure if it’s been covered in previous replies.
Have you dug into the fillers in the brand of Levo you are taking?
edit:
Most of the time it’s a matter or MORE Levo vs none/less. But there are some with reactions to fillers or who need to experiment with different forms of Levo.
But for me and as jazz notes and I’m sure many other replies show - it is common to feel worse before feeling better. Partly because our bodies do compensate for th e failing thyroid sometimes for years (8 years for me)… until it just can’t anymore.
Then it’s easy to conflate the disease progression symptoms with the Levothyroxine that you start taking to treat it.
And then it’s also common to feel worse as you start to ramp up on Levo, and also worse when you increase doses (week 5 for me is always the absolute worst and I’m ready to throw in th towel… then At week 6 and beyond it magically calms down.)
FallingInReverse thanks for your help also. The replies really help to try and compartmentalise each issue, so it seems less overwhelming. I have considered fillers and have avoided the ones that seem less well tolerated. I’m on Accord with the recent addition of 12.5mcg of mercury pharma. I’m not confident that switching brands will do much for the type of symptoms I’m finding hard to deal with but I may consider it.
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