I was diagnosed with Hashimoto's in February 2021, following a routine blood test, and put on 25mcg levothyroxine and was fine. In June 2021 my dose was increased to 50mcg. Again, I thought I was fine, although in hindsight, I think I may have been having side effects, but due to working etc missed the signs of fatigue, insomnia, no appetite, feeling full, constipation, abdominal swelling. These were not there before taking Levo.
On 1st November 2021 I had my booster covid vaccine which left me, within 24 hours, with giddiness and palpitations. My gp said it had nothing to do with it. I carried on having these until Christmas.
I ended up at A&E. They treated labyrinthitis and increased the levothyroxine to 45mcg. I had been unable to work for several months and needed to get back to work.
I also have Trimbow inhaler due to COPD, plus Simvastatin, and Alendronic Acid and Adcal D3, Paroxetine and Mirtazapine, all for several years or more.
I had a premature menopause in my 30's, and have osteoporosis. I am now 62. The antidepressants were my saviour back then!!!
My GP put me on Amlodipine for high blood pressure, and propranolol for anxiety.
I managed to get back to work, but for every 2 weeks I was at work, I had to have a week off to recover!!!! I was so, so, tired.
Because of this, I lost my job.
I ended up with a horrendous catalogue of health related issues, including gastric problems. I looked pregnant, but had lost weight, so bony arms and legs. I have always been naturally slim. I couldn't sleep much, anxiety, brain fog, vertigo even watching TV, thirsty, frequent urination, breathing problems, teeth grinding, constipation, waking up with panic attacks, etc etc.
Following online searching, I found I was not alone.
My GP, following blood tests, reduced my Levo back to 50mcg.
I stopped the propranolol, because it wasn't helping my symptoms, just masking them temporarily.
I asked my GP to change the Amlodipine, but he wouldn't. I asked him to check my T3 and vitamins/minerals. He said no. But, following recent blood tests wanted to increase my Levo to 75mcg. I asked if I could try a different Thyroid replacement, and he said there isn't one. Itold him that I intend to stop Levothyroxine due to side effects. He has referred me to endocrinology dept. I am awaiting appointment.
I have since stopped Levothyroxine. Within 24 hours, my gastric problems improved drastically. My anxiety etc is readily subsiding.
I have also stopped the amlodipine, which again has improved my digestion.
I feel better than I have for 7months or more.
I know I probably need Thyroxine, but maybe I just need T3? I don't know.
Maybe I need a vitamin/mineral boost to assist with the proper absorption of the Levothyroxine?
I read as well that Levothyroxine can cause high blood pressure (I have all my life had low blood pressure), high cholesterol, high blood sugar, and many many food intolerance, Inc. Gluten, soya strawberries, peanuts etc....
My question is... Why are we being given a medication that causes at least 4 more potentially dangerous illnesses.
Can anyone help?
Has anyone here had similar experiences?
Thanking you all in advance.
I feel that I am not being heard.
Written by
DandyButch
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My question is... Why are we being given a medication that causes at least 4 more potentially dangerous illnesses.
Well, I don't know if it does. We are all different and react differently to medications but I have been on levothyroxine for 47 years and it has not caused me to have any potentially dangerous illnesses.
Some people have adverse reactions to certain brands of levothyroxine, but it's a reaction to the fillers rather than the levothyroxine itself. Worst culprit seems to be Teva brand (and Northstar 25mcg as this is made by Teva). What brand(s) of levo have you been taking?
All other medication should be taken 2 hours away from levothyroxine, and some need 4 hours.
Some medications interact with each other so again care should be taken about timing of them, maybe ask pharmacist for advice or search on internet for potential problems.
It's not possible to comment on whether you need T3 or to supplement with any vitamins unless you test them and post your results (with their reference ranges) here.
If GP can't or wont test them then maybe consider doing what hundreds of us here do and that is a private test with one of our recommended labs. In your case it's probably best to do the full thyroid/vitamin panel which can be done with a fingerprick test at home or you can arrange phlebotomy at extra cost.
Both tests include the full thyroid and vitamin panel. They are basically the same test with just a few small differences:
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12.
Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)
Blue Horizon include magnesium but this is an unreliable test so don't let this sway your decision, it also tests cortisol but that's a random cortisol test and to make any sense of it you'd need to do it fasting before 9am I believe.
If you want to do the fingerprick test I have some tips that will help so just ask if you would like me to post them.
Always advised here, when having thyroid tests:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin). See
Hello SeasideSusie, and thank you for replying so quickly.
I did discover, quite rapidly, not to take other meds within 4 hours of Levo, and did so. I also found leaving eating for 1 or even 2 hours after, more optimal, but my symptoms continued and worsened. The effect seemed to be cumulative.
The brand names that I am aware of are MercuryPharma, Almus, and Wockhardt.
My medicines document might help you in terms of knowing what medicines are out there:
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
Wow, there’s a lot to unpack in this post! So, this is probably going to be a long reply. But, let’s see if I can help here.
25 mcg is a very low dose. Your doctor probably started you on that because you’re over 60, but in my opinion, 60 isn’t old – I’m 77! Lol – so probably not necessary to start you so low, and that has probably caused more problems than it’s solved!
Levo is the thyroid hormone T4. Admittedly, some people don’t get on with T4 – I don’t, for one. But, the majority of people do, and do very well on it. However, what is more common is people reacting to the fillers in the tablets, rather than the T4 itself. Have you tried different brands of levo? Because they’re not all the same.
These were not there before taking Levo.
That does not automatically mean that it’s the levo itself causing them. As I said, 25 mcg is too low a starting dose for the majority of people. It’s enough to stop your thyroid’s own production, but not enough to replace what it used to make. So, you end up with less thyroid hormone in your blood than before you started it, instead of more. In fact, you become more hypo.
Also, it’s pretty common for new symptoms to appear when you start levo, and for old ones to get worse. This happens to a lot of people. But, things get better as your dose increases.
Do you happen to know what your blood test results were when you were diagnosed? Always get a copy of your results whenever you have a blood test. It is your legal right to have one. Just ask at reception. You need to know exactly what was tested and exactly what the results were. We can help you understand them. You cannot just trust your doctor to do what is right where thyroid is concerned, I’m afraid. They rarely know much about it. Yours certainly doesn’t, or he wouldn’t have left you on such low doses for such a long time. It’s been over a year, and normally after a year, people would be on 125/150 mcg at least. It just makes things harder when you stay on a dose that’s too low, for too long.
On 1st November 2021 I had my booster covid vaccine which left me, within 24 hours, with giddiness and palpitations. My gp said it had nothing to do with it. I carried on having these until Christmas.
Yes, well, COVID is unknown territory for everyone, doctors included. We don’t know how it’s going to affect us, how the vaccines are going to affect us, how long the effects will last, etc. But, that is all quite apart from your thyroid problems – although it might make your symptoms work, we just don’t know. But, I doubt it’s anything to do with the levo.
I also have Trimbow inhaler due to COPD, plus Simvastatin, and Alendronic Acid and Adcal D3, Paroxetine and Mirtazapine, all for several years or more.
So, it sounds like you were hypo for quite some time before diagnosis. High cholesterol, depression, anxiety, high blood pressure, osteoporosis are all symptoms of low thyroid. But, rather than treat hypo correctly – or even test to see if you have it! – doctors prefer to throw dangerous drugs at you.
High cholesterol is linked to low T3. Increase FT3 levels and cholesterol levels drop. You don’t need, and shouldn’t be taking, statins. They are probably adding to your symptoms. Do you know that statins reduce levels of sex hormones, putting you at risk of things like breast cancer? You’re already hormonally challenged with your hypo, you don’t want to make things worse, because all hormones are inter-linked.
Did you have your vit D and/or calcium tested before starting the adcal? Excess vit D and excess calcium can cause a lot of problems. You possibly are low in vit D, most hypos are, but you’re unlikely to be low in calcium. In any case, calcium is not a cure, nor a treatment for osteoporosis. Too much of it can make bones brittle.
In any case, taking vit D increases absorption of calcium from food. For that reason, one should also take vit K2-MK7 with it, to make sure that extra calcium goes into the bones and teeth, and doesn’t build up in the arteries and soft tissues. You should also take magnesium with vit D, because the two work together. You are probably magnesium deficient by now, if you haven’t been taking it, and magnesium is very important for bones – as is vit D. But, a very bad idea to take calcium supplements unless you absolutely need them.
I ended up with a horrendous catalogue of health related issues, including gastric problems. I looked pregnant, but had lost weight, so bony arms and legs. I have always been naturally slim. I couldn't sleep much, anxiety, brain fog, vertigo even watching TV, thirsty, frequent urination, breathing problems, teeth grinding, constipation, waking up with panic attacks, etc etc.
These are all hypo symptoms. Nothing to do with the levo. You still have hypo symptoms because you are under-medicated.
Low T3 causes low stomach acid, which causes constipation and a whole host of other gastric problems. You look pregnant because your food is not digested properly, due to the low stomach acid, and it sits in your stomach and ferments, which causes gas, which causes bloating. Raise your stomach acid – even if it’s just take high doses of vit C – and things will get better.
The brain, like the heart, needs an awful lot of T3. So, if T4 is low – because it prefers to convert T4 to T3 itself – it causes many, many ‘brain’ problems, like anxiety, brain fog, depression, poor memory, etc. etc. etc.
My GP, following blood tests, reduced my Levo back to 50mcg.
Sounds like your GP is only looking at your TSH, which is very, very wrong. 50 mcg is only a normal starter dose. I don’t think he knows what he’s doing.
I stopped the propranolol, because it wasn't helping my symptoms, just masking them temporarily.
In fact, it could have been making things worse, because propranolol negatively affects conversion of T4 to T3, which would make you more hypo.
I asked him to check my T3 and vitamins/minerals. He said no.
Did he say why he refused? Probably because he wouldn’t have understood the results.
I asked if I could try a different Thyroid replacement, and he said there isn't one.
Either lying or very ignorant. There is T3 and NDT – and even different brands of T4 in case it’s the fillers that are causing problems.
I have since stopped Levothyroxine. Within 24 hours, my gastric problems improved drastically. My anxiety etc is readily subsiding.
Yes, well, no surprises there. That’s what usually happens. But, it won’t last. Sooner or later the hypo symptoms will start creeping back in again because you are hypo and you cannot live or be well without thyroid hormone.
This reaction does not mean that levo was wrong for you – you haven’t yet taken enough of it to know that. It’s a mystery why that happens, but it does, so we have to be careful not to be deluded into thinking that all our ills were caused by levo.
I know I probably need Thyroxine, but maybe I just need T3? I don't know.
Far too soon to be able to tell. And, getting T3 prescribed is extremely difficult. Most doctors are against it because they don’t understand it. Besides, even if you do need to take T3, it’s better if you can also take some T4 along side it.
Maybe I need a vitamin/mineral boost to assist with the proper absorption of the Levothyroxine?
I doubt it's just a boost you need. Being hypo, with low stomach acid, you will have difficulty absorbing nutrients and could be deficient in quite a few. But, you need to get them tested before supplementing anything.
I read as well that Levothyroxine can cause high blood pressure (I have all my life had low blood pressure), high cholesterol, high blood sugar, and many, many food intolerance, Inc. Gluten, soya strawberries, peanuts etc....
I don’t know where you’ve been reading but whoever wrote it doesn’t like levo, does s/he! No, it doesn’t cause high blood pressure. Being hypo causes high blood pressure. Same for high cholesterol. I believe it can cause high blood sugar, but not always. T3 is more likely to do that. And, I’m pretty certain it doesn’t cause food intolerances. It’s only a hormone, for goodness sake. It isn’t a drug.
Whoever wrote what you’ve been reading sounds pretty confused. Actually, a lot of people confuse hypo symptoms with levo side-effects – even on the PIL, what they talk of as side effects are actually the results of taking too much or too little. But, gluten-sensitivity is often caused by Autoimmune Thyroiditis (Hashi’s), not levo. Soy is something else entirely. It’s bad for hypos (bad for humanity, actually!) because it stops thyroid hormone entering the cells. Nothing to do with levo. Strawberries and peanuts are goitrogens – and it would take a whole book to talk about them! But… nothing to do with levo.
So, please give levo another chance. It’s really not as black as it’s painted. But, first of all, you really need to get complete testing so you know exactly what’s going on:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
Vit D
Vit B12
Folate
Ferritin
And calcium, given that you’ve been taking it. That’s very important.
If you can get all that tested with private testing, then post the results on here, we’ll be better able to help you move forward.
I thank you from the bottom of my heart for your very helpful explanations to my first extremely long post. I must confess, I have been going around in circles quite a lot. Having to sift out 'the truth' can be hard. In the 10 min appointment with the doctor, he just wants to give a tablet to cure the most obvious symptom, rather than look at the whole.
I will look into getting the bloods done, but being on UC now, don't have ANY surplus funds!
That's true. All they want to do is give you a prescription and get rid of you. And, they don't have the expertise to get to the bottom of anything - nor the interest, I have to say!
Perhaps if you could see another doctor they might agree to do some of the tests I listed.
OK, so first of all you need an increase in levo - 25 mcg. your TSH is much, much too high, and you are still hypo. So, that will be causing a lot of your problems.
Secondly, your B12 is much too low - should be at least over 550. I would suggest you get hold of some sublingual methylcobalamin (B12) tablets, 1000 mcg, and a good B complex with methylcobalamin and methylfolate, and no vit C.
Your vit D is deficient. You should see your doctor for loading doses.
Your cortisol is a bit high - was the blood draw at 9 am? But, I shouldn't worry about that at the moment. You need to get your levo increased before anything else, and the cortisol might sort itself out.
Hi DandyButch. I agree with Greygoose. You have a complicated mix of illnesses and medication which would make it very difficult to know just what was causing what with regard to symptoms. Drs often give out drugs for symptoms which are actually side effects of another medication and things start to get complicated. Greygoose has given you some good advice with regards to unpacking all the issues which is more than your regular GP would probably do! I hope you get to the bottom of it all. Before being diagnosed I was given all sorts of medication which I didn't need and which made me ill and I stopped them. Eg, propranalol, slowed everything down too much, ramipril, made me very ill with angioedema and an AKI, high dose statins gave me severe muscle pain. Once on levo cholesterol came right down and I don't need propranalol or ramipril and my kidney function returned to normal. Clearly if they'd checked my thyroid first it might have been a different story.
Dandy I thought I was being poisoned by levo. I had bad symptoms after starting it (25mgs) and they never went away. The endo was happy enough with my TSH at 4.5 (0.55 - 4.78) and my Ft4 at 15 (10.0 - 25.0) and discharged me even though I still had lots of symptoms. I was on 75mcg and the endo thought that either that or 100mcg levo would be my dose.After 4 years of this (and at the time, I thought the endo knew what they were doing; I didn't know better then) I thought if my results were fine, then it must be the levo that is making me ill so I cut down to 25mcg per day. I felt great for 3 months. Then reality hit. By the time I got tested TSH was 32, ft4 was 10 (same ranges as above) and ft3 was 3.0 (4.0 - 7.0).
I was very ill. I found this site and learned about thyroid. I learned that on a proper dose of levo my TSH should be around 1 with FT4 well over halfway in range. So my symptoms were firstly because I'd never been on a high enough dose.
As things progressed and I got my TSH and thyroid hormones at better levels it became obvious that my Ft3 was out of step with my ft4 by this time so I then began combo therapy.
So I would agree with greygoose you need to give levo a decent try on an adequate dose and then take things from there. And in the meantime learn as much as you can about thyroid. It is only by learning and being pushy with my knowledge that I got the correct treatment from the 'experts'.
Thank you Lalatoot for your reply to my post, it is most kind of you to find the time. Especially Jubilee weekend. It's at times like this when I want a doctor in my cupboard... (those that are as old as me will understand that comment from an old advert about a bank manager in the cupboard!!!)
My symptoms, at the time, were so severe, I doubted my own sanity. I even repeatedly contacted the doctor's surgery questioning my medication combination and possible interactions. They were not helpful, simply said that all these meds are prescribed together all the time, and others were OK on them. So, I thought it was just me.
Thus, this didn't help my already fragile existence. I was feeling ghastly, and I had to help myself.
I had to make a decision.
Had I known before, for definite, about the propranolol having contraindications with levothyroxine, perhaps I could have stopped that and continued with the levothyroxine.
However, the GPS were not helpful.
I have only been feeling better (not fully) for about 10 days, and am scared stiff of going back to where I was after so many months of feeling dreadful, and no support.
I was also prescribed amlodipine for high blood pressure, whilst on statins and paroxetine, and they contraindicate also.
I would expect the doctor to know this, before prescribing, to at least advise the patient.
Hi understand. Yes. Lonely condition before finding HERE 😊 you are now not alone !!
Iv taken all the steps. Started with the increase in b12 and D as I was at rock bottom ( crawling up the stairs in fact, same age as yourself lost 2 careers through it and only offered antidepressents for yrs)
I’m not there yet but life improves ( would you also like updated hrt link for post meno ?).
Tip I found helped me is writing an update of what’s happening with me, the gp receptionist puts it on the screen. A decent gp understands you are more informed and it’s ok!! They said to keep doing it - they don’t have to listen to it all during the phone call and basically ask what do you feel you need!? Win win.
Thankyou for your post, and personal story, everything helps atm.
I have done the HRT thing years ago. Was told to stop taking it about 15years ago bcoz I had already been on it 11 years and at that time, the recommendation was 10 years max.
You’re welcome Yes the updated Nice guidlelines 2015 now a big ok any age VIA skin in patch or gel. - Stops the declines, bones heart etc so good news ( Louise Newman incredible) you know what, why not lol
Yes a lot to process baby steps but it all gets better Iv had let down anger that gp so unhelpful in time of need with obvious symptoms, there is a lot more to it than their blood test sadly
Re the HRT, as I still have my womb, would it be combined therefore back to menstruating? I've been out of the loop for so long, didn't know if that has changed also.
You are an angel, sent from heaven, to save me in more ways than you can imagine.
Thank you.
Whilst I have been checking out as much as I can online, it is a total minefield, and also you just cannot read everything, it's impossible, and I probably end up missing bits of the puzzle I am trying to fix. Good job I'm not a detective!
Those two bits of information nail it.
Thank you so, so, much.
I did stop the statins about two weeks ago, cos I wondered if they were contributing to my symptoms, and haven't gone back on them yet.
Because I am on so many different meds, I kept leaving one out for a few days to see if it helped. Process of elimination, so to speak.
However, I only really noticed a difference when I stopped the Levothyroxine. Although I was still on the propanolol and amlodipine.
Do you think I should retry the levothyroxine again, and hope that now that I have stopped the statins, amlodipine and propanolol, that things might be better?
If you are hypothyroid, I'm afraid that in the long run there is little you can do to avoid taking thyroid hormones, whether that is Levothyroxine, T3 (Liothyronine) or NDT - Natural Dessicated Thyroid, or some combination of the options available.
Being permanently short of thyroid hormones is extremely bad for people. These links may be of interest :
It can lead to severe mental illness, for a start, including depression, anxiety, psychosis, bipolar disease. Before people could be treated for hypothyroidism in the 19th century (and before) many sufferers ended their days in lunatic asylums. Apparently non-treatment in severe cases would often kill people in approximately 12 years.
You might get some idea of the effects of non-treatment from this 1949 link from the BMJ :
One of the problems of myxedema coma is that it is extremely rare now, and I doubt that doctors would be able to diagnose it very easily, because people do get treated even if they don't get treated well. But it can be fatal.
This is the info from NICE on the effects of untreated or undertreated hypothyroidism :
The rest of this is mostly going to be anecdote...
I suffered from depression and anxiety throughout a large part of my life. Over the course of about 15 years (when I was aged roughly 35 - 50) I was put on four different SSRIs (not all at the same time!) - Prozac, Seroxat, Sertraline, and another one I forget the name of. They never did anything for me, my depression, or my anxiety and I came off them all.
When I was in my early/mid 50s I started to improve my iron levels by myself. I paid for my own testing and bought my own iron supplements. My serum iron was below range and my ferritin was very low in range. I found, to my amazement, that once my iron/ferritin really started to improve that my anxiety disappeared entirely and my depression was much reduced from what it had been throughout life. Improving my iron/ferritin also improved my tolerance of thyroid hormones.
Similar arguments can be made for the other nutrients involved in tolerating thyroid hormones and required for converting T4 to T3 (which is the active thyroid hormone). They are good for the thyroid but they also give benefits you might not expect. For example vitamin B12 in sufficiently high doses almost completely cured my life-long eczema and got rid of my problems with spots. Vitamin D reduced muscle pain and joint pain. Folate is apparently essential in allowing the body to make use of B12.
But the biggest problem for all of us is that dosing thyroid hormones can take absolutely ages to get right. Personally I have tried all of the following :
Levo (T4)
NDT
T3
Levo + T3
For years I could really only cope with T3. All attempts at taking anything containing T4 made me feel awful. NDT is very popular, but I never got on well with it. Levo on its own made me feel terrible. Eventually, having improved as many of my nutrients as possible, and having reduced my cortisol, I can now tolerate a combo of T4 and T3.
It really is worth it in the end. My life without thyroid hormones would be intolerable.
...
In your shoes I wouldn't take Adcal (assuming it contains vitamin D and Calcium) unless I knew that my calcium levels were low. Vitamin D is a good thing to take, but excess calcium is bad news - it can end up lining the arteries and being deposited in soft tissues.
...
This may be of relevance to you. If it isn't, please ignore :
Just to mention as Iv had this & had it explained here……when stopping certain drugs eg levo whatever , you go through a range as the chemicals decrease & it DOES make you feel better temporarily ( there’s an official word for this)Could give you false interpretation x
Hi you could be allergic to the fillers in the levothyroxine. I was and it made me really ill. Now I take the liquid thyroxine as it has no additives etc
Had I known before, for definite, about the propranolol having contraindications with levothyroxine, perhaps I could have stopped that and continued with the levothyroxine.
Doctors seem extraordinarily ignorant over interaction of propranolol and levothyroxine
How much propranolol were/are you taking ?
It should be reduced very slowly over several weeks/Months before stopping
I was stuck on propranolol almost 20 years.
I saw 6 different endocrinologists …..not one ever considered that propranolol could be a problem
You might find my profile info helpful on how I worked out propranolol was a big problem and that vitamin levels and gluten were a huge issue
It can be extremely misleading how well you feel initially stopping levothyroxine. I learnt that the hard way
Aside from any thyroid-related issues, which can be myriad, and more often than not connected to the hypothyroidism itself or the dosage taken, rather than levo, many symptoms you describe can be side-effects of alendronic acid. Although a vital medication, some people find its side-effects extremely uncomfortable. You have had advice here to stop taking calcium, but, the combination of adcal, (or similar), and calcium is a recognised treatment for osteoporosis, so do check with your GP before changing your regime. Regarding propranolol, on a personal note I took a high dose in the past for migraine, then anxiety, and have started taking it again in recent years. I know of others who are in a similar position, for whom propranolol is the only effective med for their issues, and the only outcome is possibly having to take a larger dose of levo to counter the effects of propranolol on its absorption/conversion. You have, unfortunately, conditions where symptoms overlap, and it is hard to see the wood for the trees sometimes. I hope that you can find a GP more amenable to listening.
Just reading through your post you mention you have ostioporosis, you have frequent uration, thirst, insomnia and bowle problems, constipation, have you ever had your calcium and parathyroid checked as these symptoms can indicate primary hyperparathiyroidism, I'm going through this myself I can't take the T4 meds they make me really ill, I have no thyroid so unfortunately for me I need synthetic hormones to live, and like you I'm struggling with my gp/endo to help me with my symptoms /side affects 🤦♀️ I started in April 2020 wanting on the toilet to pee way more than normal, I can't quench my thirst, I can't sleep bad stomach /bowles like you I look pregnant 😤 but I do think that's the fillers in the T4.. I have loose runny bowels on T4 but off it I'm constipated, I know how hard it is to get your surgery to do blood work, mine have just refused to do T3, T4, and vitamin /minerals B12.. Its totally wrong as these should be done alongside thyroid bloods, if you can get printouts of your blood work post them on here we have great members who can help you to interpret them. Also try to get the guidelines for taking thyroid bloods and write to you surgery outlining how disappointed you are with your treatment.. Best of luck 🤞🤞
Thankyou for your input. I want to add, which I forgot, that I was tested for addison's disease which was negative, however, my cortisol levels were elevated. The doctor said it could be cushings syndrome. I thought you couldn't get that with hypothyroidism. I am confused.
Also, I decided, after the previous kind feedback on here, to go back on the levothyroxine today, so took 50mg this morning. Now I feel lowsy. Please help.
My gp advised me to stop on the T4 at a reduction 50mg to 25mg until I see the endo in Aug, this is such bad advice as many members on here have commented😔 I'm already hypo and don't want to take the stuff anymore 🤮 I'm contacting my referrals manager after this weekend to complain,.. Its obvious the T4 is not a good fit for you as that's what I'm like when I'm on it I know practically right away it's not the drug my body likes, it took me 7 months and bad blood tests before I was eventually put on T3, but 4 months later I started with the symptoms I mentioned going on the toilet way more bad thirst ect, my calcium went over range twice then they did parathyroid hormone and they were found to be over range to, so endos wrote saying I probably have primary hyperparathyroidism, it's been very hard to separate the symptoms of primary hyperparathyroidism and side effects of T4.. I also had low cortisol but my test was negative, as for help this unfortunately will need you to be more firm with your gp, I know this will be hard I've had to adopt this in the last 2 years as my surgery are dragging their heals in helping me, I actually got asked to leave a gp appointment this March 😔 I just couldn't get this gp to listen to me also he had the wrong blood results so I questioned him on that he didn't like being told he was wrong😠 so although it will be an uphill struggle you need to get tough with the gp.. I'm still fighting 2 years on😔 and I know it shouldn't be this way am afraid the NHS services have gone to pot, I'm also thinking of contacting PALs to make a complain, we are entitled to good health care so we should not be suffering like we do, if you try the surgery again for new blood and they again refuse contact PALs and make a complaint about your treatment at the hands of your surgery.. 🌹🌹
Had synachen test too as cortisol over range in eve and at the bottom first thing in morning when it should be chipper! No further treatment. Do slow breathing technique Wim Hoff in eve ! Realise too much tech not good !!
It seems that hypothyroidism treatment is one pill, now go away. Done and dusted. Whilst that probably works for most, maybe, there is no plan B, for those it doesn't work for.
👍🏼 Yes the ignorance really starts if you are a poor convertor of t4 to t3 Your t3 needs to be in top third for wellness when hypo. Even Endo says it’s fine in low range
This is when you know you need to learn and help yourself for sure.
One step at a time. Great if you need T4 full stop
Before Levo if you went with hypo symptoms you were given NDT and folk got well. as it’s t4 & T3 combined porcine
Levo arrived, one size fits all thing!? NDT deemed too expensive, often about the money
Noticed the thyroid meds listed previously
Metavive wasn’t - it’s an NDT of sorts which you can buy, it’s has all the T elements but not as measured as NDT
( I’m going to try now, I saw a valued Dr Barry Peatfield before he retired & recommended as Natural
Maybe some are better with natural fullstop 🤷♀️
Wonderful guy a sufferer himself. Left the Nhs to his private practice as he put it, ‘before he got pushed’ ( he spoke truths)
He checked adrenals with a balancing test, mine he said right off par
He checked your pulse! How many gps check your pulse for hypo
Ps really well put! No plan B But even getting to plan A can if tedious I was 7 yrs dragging myself into surgery just to be offered antidepressents. I was subservient type back then.
…You may like Dr Peatfield book, others Geoff Skinner, there is a list here I’m sure
Hi I’m allergic too, to the fillers. I was so ill and didn’t know why. I paid private and she wrote to the doctor to put me on liquid thyroxine and now I feel human again. The doctor would not give it to you tho as it’s costs £150 a bottle and the tablets are £1 a box.
I'm glad you, and others are finding solutions. It gives me hope. It's just when you are on a limited income you don't have that choice sadly.But who knows?
Hi if you can get a NHS referral which takes a few months. You can ask them to write to your doctor for liquid thyroxine, if you say you are sensitive to the fillers 😀
My GP is referring me to the endocrinology dept., but having read some posts on various forums, sometimes they do not have adequate thyroid knowledge or experience. So, I have been trying to be my own doctor in the meantime, knowing it could take months for the appointment anyway. My doctor seems to know nothing. At least if I can try to cover all bases before the appointment, (ones that don't cost money), I, hopefully will be better prepared.
I’m sorry you have suffered so much but honestly how on earth can you know what is what with all the medications you’re on, I’m absolutely horrified by the amount of meds you’ve been taken. Antidepressants for a start alone can cause fatigue and GI issues and osteoporosis and anxiety, GP’s seriously underestimate the harms. I’m currently on Mirtazapine which has completely wrecked my life with awful side effects, been tapering off this for 2 years now. There could also a potential issue with what you’re taking and how it reacts with your Levo doctors do not always make the proper checks on these things and things get missed. Your GP doesn’t sound very helpful at all so best to find someone else, stopping Levo can be extremely dangerous but there’s no doubt you need a full thyroid panel and someone to help you figure out what’s causing what.
Sorry forgot to add, Mirtazapine can cause high cholesterol and blood sugar issues so this is the difficulty when you’re taking lots of meds, it’s difficult to know what causes what.
I have not taken the amlodipine and propranolol for a short while. I have not taken any more of the alendronic acid and stopped the adcal d3 yesterday.
I have been trying to eliminate unnecessary meds, or at least the ones I can leave out, albeit temporarily, until I straighten out a bit.
I started 50mcg levothyroxine this morning.
I shall try again.
Hopefully, I won't get the awful side effects, reactions, I had before. We shall see......
I got terrible symptoms (e.g anxiety) when I was first put onto levo. It took many years to figure out that the gluten intolerance which had launched Hashimoto's that destroyed my thyroid, also caused massive nutritional deficiencies because there wasn't much left of the villi in my gut. It took about 15 years to get to a point where I felt somewhat well, and now I'm doing very well. I am currently on a dose of liothyronine 7.5mcg + levothyroxine 100mcg daily. I use a small dose of liothyronine to keep my FT3 near middle of the normal range. I have found that I do best when my FT4 is in the normal range, but somewhat low in the normal range; approximately 25% up within the normal range.
Levothyroxine does not, judging from my experience, *cause* food intolerances. However it is common for food intolerances to co-exist with hypothyroidism.
It is not encouraging that your GP will not look at FT3 and FT4. Problem cases cannot be treated without the additional insurance of examining that those are in their normal ranges, and you should also be tested for excessively high rT3. I will hazard to say that, if you got a doc to determine that your FT4 is just over the bottom of the normal range, and you feel anxiety, panic, or similar symptoms, that is likely a sign that your gut has been wasted by an allergen and the symptoms won't go away until you remove the allergen and let the villi in the gut recover. This process can take a fairly long time. I went GF in 2003, but didn't start feeling fairly well until 9 years later. I'm pretty sure that excessive time lapse was due to fumbling doctors who didn't know all the things that needed to be done, to get me well. I never even got a diagnosis of gluten intolerance from an MD, I had to go to a naturopath to find that out.
Thank you for your info, and sharing your personal story. I feel for you.
You have had an extremely long recovery from this, and I am hoping that I don't have a gluten intolerance, or any other intolerance,
because I dread that scenario. You must have the patience of a saint to tolerate that long recovery.
I just hope that now that I have omitted some
medicines, which may, or may not, have exacerbated my symptoms, that this time things will be better. I am certain, however, that I will probably know in a very short time.
Unfortunately, the average doctor does not understand the cause(s) of Hashimoto's. The average doc gives patients with Hashi's, a dose of levothyroxine to reduce stress on the thyroid, which is being damaged by Hashi's. These docs do not understand that Hashi's is an environmental illness: either you have taken in excessive quantities of one of the many poisons now in the environment, or your food supply includes one or more allergens. Gluten, dairy, and soy are the most common allergens. You might want to visit Izabella Wentz' website, thyroidpharmacist.com, and look at what she says about the causes of Hashi's. Wentz had Hashi's herself, got over it, and has written a couple books about how to diagnose what is causing it.
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levothyroxine dilema
ANYBODY GOT ANY IDEAS WHAT I SHOULD DO
Stopping T4 Levo and taking T3 only with Hashimoto's
Levothyroxine caused muscle weakness and pain
