advice please

[Goinginsane1]

hi. I have started with stomach acid issues and achey muscles, tingly hands and increased anxiety (which was already severe). The last time this happened I needed to increase my thyroxine so that’s what I have done. The gp won’t test my thyroid as it was done in November and it was fine even though I’m telling them I’ve been eating more (as I’m underweight) and I have these new symptoms. I am awaiting results from Medichecks hopefully tomorrow or the next day for my thyroid to confirm exactly what’s going on. I have increased my dose to 100 today based on the symptoms and it feels the same as it did last year when my TSH went over then.

My question is how long do you think it takes once you increase your dose to help address the acid/ achey muscles and bring my TSH back down?

my anxiety has been so bad all day today that I have had to take diazepam over an hour ago but it doesn’t seem to be helping me tonight 😞 if anything it’s making me feel more sick (possibly due to the stomach acid problem). I have tingly hands/arms too which I thought the diazepam would stop but up to now it hasn’t and I feel more sick. Diazepam usually calms me down within half an hour but it hasn’t tonight 😞 and I don’t like taking it unless I really need to as a last resort.

I’ve had diarrhea this afternoon too which has causing the extreme anxiety and trying not to freak out about that as I need to keep food down but it’s so hard. It’s the anxiety that probably causing the tummy pain and diarrhea.

I’ve increased it coz I was eating more and starting to enjoy my food again the last week or so knowing that my tsh will go up as it did last time. But now I’ve increased my thyroxine slightly and had diarrhea this afternoon as struggling with IBS and struggling to eat properly again due to the acid and feeling sick but know I need to keep eating as I’ve increased my dose.

Should I stay on the increased dose and pray that the acid/sicky feeling goes in a couple of days and the tight / achey muscles and then I will be able to eat more again and get back on track and start to feel better and in turn improve my severe anxiety?

[Buddy195 Administrator]

I think I would hang fire increasing your dose until you have the blood results back. The reason I say this is that I have spikes in anxiety when both under and over medicated. When I feel my anxiety spiralling I always check my thyroid levels & key vitamins before adjusting medication/ supplements. I need both thyroid levels & vitamins optimal to keep my anxiety at bay (for me this is the worst symptom of having a thyroid condition). I also increase/ decrease super slowly, as this again can flare my anxiety- I only adjust by 12.5mcg alternate days at first until well tolerated. I’m definitely more of a tortoise than a hare!

Are you taking a magnesium supplement? Taking this early evening definitely helps me relax- unwind.

Are you gluten free? For me, eliminating gluten resolved all my stomach issues and stabilised my weight (I too lost weight when not adequately medicated).

[Goinginsane1 in reply to Buddy195]

the below were my results last week (2nd feb). I have since eaten more and started to enjoy my food and finishing my dinner of an evening and started to feel better until I started with a bit of stomach acid and achey muscles and tingly hands. I had these symptoms when I started eating more a few months go but I freaked out then and thought I couldn’t increase my thyroxine coz my t4 is too high as it is/was. So back then the only way I thought to manage it was to reduce back down what I was eating to bring the TSH back down and those symptoms went.

However this time round I’ve started eating more and told myself that I am going to have to increase the thyroxine when I’m eating more as I am underweight and need to eat more and try and put some weight on so that’s what I’ve done. I slightly increased my thyroxine from 75 to approx 85ish (added another quarter of a 50 tablet) but was still experiencing the acid (although I only increased it for a few days and maybe I should have stayed on that a bit longer to see if that helped. But I was struggling to eat food due to the acid feeling so I increased it to 100 yesterday.

Since increased the dose I have been having a lot of tummy pain since Saturday. Yesterday was a lot worse and I had diarrhea in the afternoon and thought it was going to happen again last night but I took an immodium before bed. I have woken up with it again today and waiting nervously to have diarrhea again today. Although I’ve taken slightly less than100 today. More like 85ish. I haven’t been able to eat as much I was was a few days ago either so I probably don’t need as much thyroxine due to that now too. I am struggling to find a balance. I suspect that by increasing the dose which I believe I need to when I eat properly and do start to feel better anxiety wise (I have been under eating for a couple of years and underweight) then my tsh goes over but t4 always high 😞

I don’t know what to do as I suspect that since increasing the dose it is making my t4 go even higher and potentially causing the diarrhea and I can’t afford to lose any more weight! I am going to have to take immodium today to hopefully stop the diarrhea.

I have got the drs today but they aren’t going to listen to me as I have awful health anxiety and they are refusing to do any more tests even though this is a genuine problem. I even saw an endocrinologist on nhs a couple of weeks ago and tried to explain what happens and I feel trapped with under and over active issues but he didn’t want to know and just said anxiety is awful! 😞

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[Buddy195 Administrator in reply to Goinginsane1]

When did you last see an endocrinologist? Personally I’ve found a massive reduction in anxiety with a reduction in Levothyroxine but the addition of a small amount of Liothyronine. Having my FT4 at the top of the ranges causes me increased anxiety, but I need FT3 higher to balance this.

As your FT3 is lower in the range and FT4 slightly over range, it may be worth exploring combination treatment to aid your poor conversion. Only an endocrinologist can prescribe Liothyronine (and not all do- you may need to look privately to explore this further).

[Goinginsane1 in reply to Buddy195]

This was yesterdays results…

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[Buddy195 Administrator in reply to Goinginsane1]

With an over range FT4 my anxiety definitely flares (plus palpitations, tremor, fast pulse etc) so I would reduce Levothyroxine. I decrease (or increase) slowly eg by 12.5mcg per day at first (then another 12.5mcg when tolerated). When you have been on a 25mcg reduction for 6-8 weeks you need to re check levels and share with us. When you get FT4 within range, i would consider looking for an endocrinologist for a combination treatment trial to see if having FT3 higher in range alleviates your adverse symptoms.

[SlowDragon Administrator in reply to Goinginsane1]

Was last dose levothyroxine 24 hours before test

Which brand of levothyroxine and is it always same brand

What vitamin supplements are you taking

When were vitamin D, folate, ferritin and B12 last tested

Roughly how much do you weigh in kilo

TSH suggests you are under medicated

I would agree with Buddy195 a you really need to trial strictly gluten free diet

Ideally get coeliac test first BEFORE cutting gluten out

GP should test for coeliac at diagnosis of autoimmune thyroid disease (hashimoto’s)

For many people cutting gluten results in reduced anxiety….as you can start absorbing levothyroxine better and vitamin levels may improve too

[Goinginsane1 in reply to Buddy195]

I’m not taking a magnesium supplement. I took one a while back and i don’t know if I had a strange reaction to it but had severe anxiety and burning up the days I took it and had to stop.

Maybe I should try a different magnesium supplement though? Do you recommend any? There are different types aren’t there?

I’m not gluten free.

I have been eating gluten the whole time and for months my bowels have been great and normal and no tummy issues since eating healthy. However I was not eating enough and when I did/do start to eat more my TSH goes over as I’ve said and I get awful stomach acid problems and then can’t eat at all. But when I did increase my meds my t4 goes even higher giving me more issues which is why I’ve got diarrhea now I think. I know that my anxiety needs addressing but I can’t take anti depressants as they affect my heart.

My cortisol levels are extremely high too on the last test. I do have diazepam which I took last night but it didn’t help my tummy at all. Maybe I should take one daily short term to help my anxiety levels but I don’t want to get addicted to it either 💁

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[Buddy195 Administrator]

I take magnesium glycinate as this is gentle on the stomach.

I would 100% recommend fully eliminating gluten for 3 months to see if this helps you. Some people choose to have a coeliac test via GP before eliminating gluten. I’m not coeliac but am certainly gluten intolerant & wouldn’t touch it again!

[CoeliacMum1]

Do you know your nutritional status eg iron folate vitamin D & B12 the latter 2 if low are often linked to tingling and aches muscle problems. However the tightness of muscles is possibly exacerbated by anxiety and tension as is the stomach issues.

I have experienced tension in muscles and was tested for Addison’s (I’m definitely more the other way) and still having some mobility problems but also found out with more scans that I have endometriosis and adenomyosis too along with late menopause (still perimenopausal at 58) and it’s probably causing everything to go out if whack so oestrogen isn’t a friend of thyroid disease but progesterone is and if you are experiencing any hormone fluctuations in these areas it too can cause problems.

Rest and relaxation techniques and getting enough sleep will help balance some hormones…sleep deprivation is real thing and causes our hormones and emotional dysregulation

Are you on any other medication eg heartburn or diabetes medication these can cause low levels of B12 as do digestive issues if you’re constantly having trouble, it might be wise to get few things checked. Of course increased dose of T4 meds can have same symptoms as can side effects of medication are you on same brand is there something that you are sensitive too … probably need to keep diary and see if you notice any changes on certain brands then tell your GP or ask for liquid Levothyroxine they will prefer to give you your preferred tablet as costs more for liquid.

Have you had coeliac test regardless of if you think you don’t have any issues …I didn't have gut issues at all, I had neurological burning tingling and skin problems and still have cast iron guts but my extremely high antibodies was most definitely coeliac disease (and diagnosed by scope and biopsies) and it triggered all my autoimmune conditions along with hormones all over place as starting perimenopause didn’t help…of course lactose can do the same, do get tested before omitting anything from your diet.

Autoimmune issues can start way before you get full blown problems so regular tests without looking at autoimmunity status means very little to start with and NHS tests maybe ok so if you’re having symptoms looking at these triggers can help … but NHS don’t treat/mecicate any different regardless so don’t test it, but finding the root cause and dampening down the inflammation helps control the problem.

Your Endocrinologist can test these as I had my thyroid & adrenal and blood sugar tested as hormone imbalance can throw things out.

I hope I’ve not overwhelmed you with my long message, this is just my experiences and knowledge with many hormonal issues autoimmune diseases in last decade or so… just take small well-being steps you can do yourself as it’s very difficult to get proper help out there re NHS as more demand on the system.

Hope you get some help soon.

[Goinginsane1 in reply to CoeliacMum1]

Could I private message you please?

When you say Estrogen isn’t thyroid friendly but progesterone is. I recently tried taking the pill and lasted 2.5 weeks and stopped feeling very a week ago due to awful migraines. It was the combined pill. I’ve got the drs this afternoon and was going to ask if there is a different one that might not cause migraines. And the mini pill is progesterone only isn’t it? Do you think that would help me? I know for sure that my estrogen levels are low ( progesterone hasn’t been tested but probably low too).

[CoeliacMum1 in reply to Goinginsane1]

I have accepted your private message FYI.

I have no experience on blood tests or taking pill personally to comment on, if these things and if they will be suitable to you… please see GP on that look up and research some things beforehand is usually useful. I only share my experiences …I’m well over 45 (58 in May) in which NHS doesn’t do routine blood testing as our hormones fluctuate so much in perimenopause. HRT I have several years experience of both cyclical & continuous and now some knowledge in gynaecological areas re endometriosis and adenomyosis as unfortunately this is where I’m at and next step is injection to shut down my hormones (not looking forward to that) this is to see if my conditions are oestrogen fed and exacerbating my mobility problems as we know I have several lesions in pelvis and can cause pain, from Octobers MRI findings.

I have read oestrogen can cause decrease conversion in thyroid hormones (T4-T3) - as do other things- there’s some literature online if google and progesterone declines first in perimenopause usually, then exacerbating various things including thyroid but this can be very individual thing some of us don’t clear oestrogen efficiently and recirculating hormones are not good for us. Many who are perimenopausal regardless of age, or others with hormonal problems can get wobbles with other hormones until settled it’s vicious circle.

Only know my daughter suffered with migraines from the Pill (not sure which) and messed her up but also she’s got long Covid and has been on a NHS programme for well over a year possibly 2 now I forget…but has a stressful job as she’s NHS Consultant Psychologist and her work load is heavy so stress knocks her back.

I’m aware progesterone in the area of HRT which is in its natural form not like contraceptives they’re progestins (synthetic) some don’t tolerate it well but honestly for me progesterone is the missing piece I definitely suffered when on cyclical HRT and within days of taking it my anxiousness declined and deeper sleep tension in muscles eased.

I have only ever had in past the Follicle stimuling hormone test (FSH) which again is pituitary hormone like Thyroid stimulating hormone (TSH) is, these hormones trigger the ovaries regarding FSH and Thyroid with TSH these are measured in our circulating blood.

I’m aware of luteinizing hormone (LH) blood test but never had it… nor Dutch tests many functional clinicians do.

Low levels of oestrogen have their own symptoms too this might need to be addressed if you’re low as you say…so I would speak to your GP if under 45yrs look at that area if other things are ok and they can test…if over 45yrs consider are your symptoms perimenopause.

Dr Louise Newson has check list on Balance website

balance-menopause.com/

Your GP surgery (U.K.) should be totally aware of the procedure maybe ask at reception who has best knowledge of these areas save multiple visits- often Drs have their qualifications to view on surgery websites- you can simply look up and see what extra diplomas etc they have or special interest in.