Diagnosed with sub clinical thyroiditis a few years ago. My supportive doctor with some prodding medicated me to what I feel is a decent level. My tsh was below 1 and t4 near the top of the range. I do have swelling in my thyroid as seen under ultrasound.
Unfortunately my symptoms have increased and for some reason my tsh has gone haywire again and is up at 5.3 and t4 11.5.
My original doc has moved on and I have a new doc who has just pointed out that I don’t have antibodies and my original levels were only sub clinical so she’s suggested I gradually withdraw my medication (levo) because “taking medication I don’t need can be just as dangerous”
I’m currently on 150 micro grammes and she suggests reducing to 100 for a week, then 50 for a week then nothing for 6 weeks!!
I’m torn between having to prove a point and not making myself ill.
I know it’s crazy, you know it’s crazy but what do I do and if I do withdraw, what can I expect?!
Honestly these health professionals are scary
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gigitheweegie
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I have lots of hyperparathyroid symptoms but they overlap with a lot of things I guess. My thyroid scan showed inflammation at the back of thy thyroid but a 4cm needle couldn’t reach it, results came back inconclusive and they just didn’t bother trying again with anything longer. Had kidney stones at the start of covid and I keep having to go for kidney scans where they tell me I’ve passed a previous stone but have a new stone. I never get the follow up appointment which the sonographer/radiographer tells me I’ll get then I get another scan appointment months later.
I was due another scan a few weeks ago but again cancelled due to covid and reappointed for next month.
I’ve mentioned my symptoms to the nurse practitioner who tested my calcium levels and she said they were ok. Not sure if this is enough but keep waiting on the appointment for my kidneys to ask the question directly.
My vitamin d is always low no matter how much I supplement and I do add in k2 to prevent any calcium issues but not sure if I’m making matters worse. The more I read, the more my head is scrambled with it all and what’s for the best!
I’ve mentioned my symptoms to the nurse practitioner who tested my calcium levels and she said they were ok. Not sure if this is enough but keep waiting on the appointment for my kidneys to ask the question directly.
My vitamin d is always low no matter how much I supplement and I do add in k2 to prevent any calcium issues but not sure if I’m making matters worse.
You need Parathyroid levels, calcium and vitamin D tested together
Request/insist GP does this
Very difficult to test parathyroid levels privately as the test must be processed immediately. Important to test calcium and vitamin D as well at same test
If you suspect Hyperparathyroidism you shouldn’t supplement vitamin D
The second reason for a low vitamin D is much more serious (and less common) and may indicate that you have primary hyperparathyroidism and need an operation to remove a small parathyroid tumor. These folks should not be taking vitamin D until after the parathyroid operation. If you have low vitamin D, you must understand which of these two groups you are in.
Having a TSH over 4 also comes with some associated risks.,, in fact once it gets near 10 some of these associated risks are greater than the 'low TSH' risks they constantly bang on about. academic.oup.com/jcem/artic...
i could understand an attempt to carefully reduce and come off Levo in someone who'd only been started on it after one of the well known temporary thyroiditis causes .. like sub acute thyroiditis or de quervains, or post partum thyroiditis , if TSH was stable.... after all who would want to be on a fixed daily dose of Levo for life if their own thyroid might work OK again, i wouldn't.
But since your current TSH is 5.3 and your current fT4 is presumably either below range or low in range... then i cannot see why the GP thinks now is a good time to embark on this little experiment with your life.
I'd be asking them to re-scan my thyroid first, before i even considered agreeing to this.... to see if it looks better than it did last time they looked... ( i bet it doesn't) ... not everyone with visible autoimmune damage to thyroid has raised thyroid antibodies, but it's still visibly damaged.
How do you currently feel ?
if you feel well.... don't risk buggering it up by coming off levo .
if you feel hypo . get a dose increase to deal with the current high TSH /low fT4... your current result suggest this is needed.. and in fact your current results (if repeated a 2nd time) would GET you (another !) diagnosis of subclinical hypo which (if symptom are a problem) the NHS are allowed to treat, regardless of whether antibodies are positive or not .
I haven't had thyroiditis either and my TSH was certainly never that high. Not as high as some members. I don't have antibodies either so I'm either one of the 20% of Hashis patients who never show them or there's another reason for being hypothyroid.
That said I've had weird symptoms over the last 6 months. When I had a dose increase end of September I got a very itchy rash and once that went I then got itchy head, face, prickling all over. I naturally blamed thyroid meds as it was the only thing that had changed. Nothing the GP suggested or prescribed helped. They contacted the Endos as the hospital who suggested I stopped Levo. Just like that.
I have tried to stop it several times, I lasted just over a week before I felt so ill I had to go back on it, itching be damned. I've never felt so completely drained of energy. I literally felt glued to my sofa, it was horrible. So now I take my Levo, occasionally if the prickling is bad I'll take an antihistamine but I having neurological investigations done to see if that's the cause.
What I'm saying is in a very long winded fashion is beware stopping it. If your TSH is going up and you have symptoms then surely an increase is indicated. Not stopping it. I'm struggling to see the logic of your doctor here.
Not sure if this applies to you but my mum had Teva levothyroxine given to her from the pharmacy on one occasion and she had a very severe reaction to it , she was covered from head to toe in a rash. We asked that she not be given this brand again, and twice they dispensed it ( she gets her meds delivered to her house) she returned them to the chemist who again dispensed the Teva brand, my sister in law returned them. The pharmacy assistant said they hadn't got anything else, couldn't get anything else and that the allergic reaction was something she would just have to put up with as not taking the levo was more dangerous.
I kid you not!
We changed pharmacies pretty quick after that little episode , I do wonder what training some of these people have, do they know nothing about anaphalaxis !!
I take Accord as a named brand as I had gastric issues on a different one. I'm not sure it is Levo related as the rash quickly disappeared and I've not had it since. But I do get this pins and needles prickling sensation which comes and goes. No idea what causes it. But I totally agree that the ignorance of the medical profession is something to behold.
Yes I do have B12 deficiency and get jabs every 3 months, I also have fibro and Ehlers Danlos, as well. As the B12 and underactive thyroid, I've won the lottery on chronic health issues, go me lol.
Tbh I can live with pins and needles in my feet and hands, I've had them for over 15 years and have learnt to put up with them, it's the fact it seems to be spreading to my head, face, thighs etc that is weird and really very unpleasant. I'm due an MRI on my brain and spine at some point and some further neurological tests.
I've asked about getting more frequent Injections, the computer said no. According to my GP who possesses magical powers, I don't need them. She can tell just by looking, apparently.
And following all the helpful advice here I've taken B complex since October.I'm going to ask neurologist if getting more frequent B12 jabs would help. He might be able to overrule GP 😀
Well you have better GP than I do. Mine said my B12 levels were good, although they haven't been tested in years, not sure how she reached that conclusion. I'm definitely taking it up with the neurologist when I see him in April.
With a TSH of 5.3, what appears to be extremely low FT4 and a swollen thyroid gland you are in need of a Levothyroxine dose raise, not a reduction and certainly not to come off meds. Thyroid antibodies fluctuate and one negative result can not eliminate Hashi.
In a previous post you have complained of being unable to raise Vit D. Usually it’s a lack of sunshine and/or malabsorption issues (celiac, Crohns, etc) but it can also be due to genetic impairments.
To eliminate hyperparathyroid issues you will need PTH tested as well as calcium and Vit D. Do you supplement magnesium? This is needed in the activation of Vit D and might help the little you have to work better.
Absolutely .... but may not be quite enough if only 'time to time' 😬.
There is a test (quite expensive) for Vit D receptor impairments that I would take in your position just to eliminate VDR issues before going down the whole hyperparathyroidism route. (Actually I did take it when in 'test mode' but was fine).
Don’t do it. It is not worth making yourself ill just to make a point. Your GP doesn’t know what she is talking about. I’ve been there, done that and have never got back to where I was. When I spoke to my GP, I told him that I thought the tablets were causing me terrible side effects, he just said “well, just stop taking them then, you were only a bit over” meaning a TSH of 5.13 just about 12 weeks after RAI treatment (with hypo symptoms) when the Endo initially told my GP to start me on 50 mcg Levo. Instead of saying he would ask the Endo for his advice or bothering to find out the cause of the side effects he said, stop talking them and have a blood test in six weeks! I was already taking 100 mcg Levo with a TSH of 0.68 at that time. Six weeks to the day later, my TSH had risen to 7.51. During the first two weeks of not taking Levo, I developed plantar fasciitis in my left foot, frozen right shoulder and my clothes started to feel tight! How stupid was I to continue but I was naïve and thought he knew what he was doing. His knowledge of treating thyroid problems is minimal as he has proved over and over again. That was just over three years ago and when I found this forum. I am still suffering multiple hypo symptoms with absolutely no help from the very people who pushed me into having RAI.
I won’t tell you exactly what I think about them or my GP, I would get thrown off the forum.
What a nightmare. Sorry to hear this. Really appreciate your advice. Interesting point about plantar fasciitis, my dad suffers from this and has all the treatment under the sun without success. He is just within the tsh range which his doc thinks is acceptable. My dad just thinks docs know best! 😬
What can you do. I’ve realised in the last three years that they certainly don’t know best ☹️Plantar fasciitis was the first thing to show it’s ugly head after stopping Levo, about a week. GP said “you’ll just have to let it resolve itself. He’s a joke.
I certainly agree. We had a big bust up over the phone when he tried to “diagnose“ me with CFS. That was after two telephone consultations over as many years when I told him I was still very fatigued because my FT3 was too low. He’s funny alright.He’s part of the problem I find myself in now. I won’t rant further tonight because I get really angry 🤬
In theory we should not be searching the internet for information at all "on why we are still symptomatic" or "how to increase or decrease dose to rectify a thyroid gland that is struggling,?!"
That's the very basic and few GPs (unless they have a dysfuncntional thyroid gland themselves ) will not have a clue.
One GP told me:
"Your TSH is too low - Your T3 too high and T4 too low"
me: "Yes doctor - TSH is low because I take T3 only. So my T4 will be low as I take none - T3 will be high as I take T3 only.
GP - but T3 converts to T4. "No doctor, it's the other way around T4 should convert to T3.
Another major fault is that the BTA withdrew the original thyroid hormone replacements, called NDTs (natural dessicated thyroid hormones) created in 1892 and saved lives from then on. They withdrew this original replacement without any warning to patients who were well upon NDTs. The decision caused many patients who had been well to become unwell! The same happened with T3 also. but have now reinstated it
NDTs (I believe) - only if patient had been prescribed it.
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Should I see the doctor?
How slowly should I come off T3 to see if I can actually cope on my own now?
How long after coming off thyroid meds to take blood test?
Dr wants me to come off NDT
