I have been doing well, feeling better than I had in years and then for no apparent reason down I go - been feeling horrible - mixture of hypo & Hyer symptoms as usual.
Your TSH is too high which is most likely the problem. Everything else looks pretty good. Are you taking any thyroid medication? Has your doctor mentioned anything about your TSH?
It looks like you need a significant increase in your thyroid medication. The symptoms of hypothyroidism and hyperthyroidism are very similar. Many of the typical hyper symptoms are actually also hypo symptoms.
Discuss with your doctor an increase in your medication. Your thyroid may have deteriorated further which is quite common if you have antibodies.
Thanks Carolyn, I can't have Thyroid medication, it makes me really really ill, so I just don't take it. I will forever live to regret the day I was started on Thyroxine as it completely ruined my health.
I have tried Thyroxine, Nutri Thyroid, Westhyroid pure, T3 the Mexican version and uk and currently now have Liquid Levo but all are like poison to me.
I have really had enough of it all now, maybe their is only one way out of this miserable existence
I suppose you are aware that there is a big difference between brands of thyroxine? I don't like to hear the implications in your message. Poor old you. I'm so sorry.
I have seen Dr Peatfield three times and he doesn't have the answer, at the moment I don't have the money to see anyone else.
When I say the thyroid medication is like poison, for me it really is, I get palpitations, I can't breath, parts of me burn up, while other parts are freezing cold, I start feeling sick, maybe also needing to run to the loo, dizzyness, the fibro pain gets much worse, and I get very hyper.
I can understand people giving up on me, but I shouldn't be left without any doctor even trying to help. I have betablockers and have started on sleeping tablets to try and get some sleep.
I do appreciate your kind words Joeylis7 - it makes a big difference
Has your endo suggested trying propranolol (beta blocker) as well as Levo?
Like you I had hyper type symptoms as well as hypo and when initially started on thyroxine became extremely ill. (I have Hashimotis - initially extremely high antibodies. Was not on high enough dose of Levo initially)
I went from feeling ill, but functioning before starting thyroxine .....to feeling extremely ill on thyroxine alone. But stopping taking it made me even worse. GP and local endo were adamant this could not "just be thyroid". Was in wheelchair or bed bound when stopped taking it.
Masses of tests by various endos - cortisol, heart monitor, MRI, pituitary function, MS specialist etc etc. all these tests came back "normal"
Was told I HAD to take thyroxine and that I needed to increase dose from 75mcg up to at least 100 or 125 mcg. But I couldn't tolerate higher dose
Eventually endo managed to persuade me to also add in taking propranolol. ( I had tried it previously with poor result when first so ill)
For me propranolol blocks the hyper symptoms and the thyroxine helps the hypo ones. In reality I think it helps with what is an adrenal issue caused by thyroid. Certainly any stress always made things much worse.
I can function pretty much normally on both - I think of the thyroxine as "the petrol" and the propranolol as "the brakes" that stop me running off too fast and crashing!
Was difficult to start on propranolol as it lowers blood pressure and mine was already very very low. But this improved as I was able to slowly increase thyroxine when on propranolol. I take 3 or 4 x daily of 10mg propranolol. ( I tried slow release version but couldn't tolerate it.)
125mcg Levo - always same brand - Mercury Pharma suits me. I take thyroxine at bedtime - found this much better than taking in morning.
I have tried T3 and NDT and most of "the alternative" options. All made me worse. So I stick with this as it works for me.
I hope you find something that works for you. I know how bad it can be.
Having now read you previous posts I can see Endos have tried in the past to get you on to Levo by adding propranolol.
Propranolol is not addictive. True - You can not stop taking it suddenly, but have to reduce very slowly. But it is not addictive. It is used to help suppress adrenal problem. If adrenal problem not resolved then will need to stay on it because you need it. (Many people take it to lower BP or for anxiety for years anyway.)
In my case as I was so very ill when stopped thyroxine they were going to hospitalise me to get me started on both.
You could start on smaller dose than 10mg by cutting 10mg propranolol in half (easy to do) - I found propranolol needed to be taken very regularly (4x day) especially early on, while my body got use to thyroxine. This is a recognised way by endos of getting thyroxine accepted into your system.
i had similar burning sensations, pins & needles, panic etc etc plus no energy and freezing. That was with TSH of only 8. (apparently impossible to be that ill with such a mildly raised TSH....!!!!!)
Ask for another NHS referral to a "centre of excellence" for endocrinology. Look for endo who specialises in adrenal and thyroid issues.
I had 3 different NHS referrals. Still wasn't easy - but I am still here after over 20 years on just Levo and propranolol.
Thank you so much for taking the time to reply to me - I do appreciate it.
It does sound like we have had similar experiences - I am so glad you found something that really helped.
I am still on Propranolol - does is not 40mcg three times a day, the only thing the Propranolol has helped with is lowering my high pulse, it doesn't touch any of the other symptoms, I did ask my GP if I could try a different Betablocker but was told they are all pretty much the same.
It is a vicious circle that I have not managed to break, I have started taking sleeping tablets but they seem to be making me depressed, I have tried melatonin, yoga, essential oils, even on my better days some exercise but still no joy.
I really do wish I could take some form of thyroid medication, even when I was on hydrocortisone - that was not without nasty effects.
I am so glad you are doing a lot better, how awful you had to suffer that, as i do - it's so very wrong
I am sorry, Kittenwhiskers. Your name is so cheeky, too! Slow dragon seems to me to be making good points, but you say you've been there.
I now feel almost lucky to be able to take thyroxine, even though I crash almost daily with totally bust-up adrenals, and hVent yet found anyone to lessen my ghastly symptoms, not even with 50 mg hydrocortisone.
Good luck! Don't go to Switzerland unless it's to eat the gorgeous chocolate!
50 mg Hydrocortisone - my goodness, that is a large dose, is that being monitored. You sound so poorly to, bless you for taking the time to write, without people like you, I don't know where I would be
I like the name Kitten Whiskers - thought it made me sound young : > now hurdling towards 35 I will have to change it soon
50 is not a large dose of HC. Some people take more than that. Maybe you just weren't taking enough to do you any good.
Have your adrenals been tested? Have you tried any other NDTs than Westhroid? There are several more and all affect people differently.
Did you try taking HC for a couple of weeks before introducing the Levo/NDT/T3?
You've had your B12 (fine) vit D (fine) ferritin/iron (could be higher) and magnesium (could be higher) tested, but what about zinc, selenium, copper, and other vitamins? It could very well be that you have some sort of nutritional deficiency.
Do you take lots of vit C? And do you eat plenty of salt and fat?
Thank you for your reply. I do have more sea salt since you told me about that previously, as for fat - I cook with Virgin olive oil and use dairy free sunflower margarine. I am veggie and do not have gluten and minimum diary.
I do take lots of Vitamin C and a good selection of other vitamins/minerals. I have been refused all other tests.
With regards to thyroid meds - the only other NDT i have tried is nutri thyroid. I am now on liquid T4 - one tiny dose once a week, I did try to increase that but I went crashing down like a lead balloon and still recovering from that. I do wonder if the issue is with my tummy problems and the Candida like issue I have had since I was 19, doctors say it isn't candida.
When I first had liquid T4 I took it every day for nine days in a row and was feeling a lot better, then it all went so wrong.
I did have an ASI test done and my adrenals were constantly low at all times, I was started on nutri adrenal and that was fantastic - but then violent diarrhea started - a common side effect, but even had it with the nutri thyroid. Then I got HC - and I have to say it absolutely saved my bacon - but I had to stop that as well because of nasty side effects, and just like the thyroid meds i small about seems to set off some sort of reaction.
I really am suffering and no light at the end of the tunnel for me
Kitten, the margerine isn't a good idea. Sunflower oïl is not a good oïl. Not because suflower seeds are bad - in themselves, they're very good - but it's the process they go through to become oïl that is bad.
Legend has it that margerine was invented to feed turkeys in the US. The turkeys died, so they decided to see it to humans.
I Don't know how much of an effect it could have on you, but perhaps you could cut it our for a while and see if you feel any better without it.
Butter, on the other hand, is a super food. And you would be so much better off having that than the margerine.
The main problems when you are veggie are low B12 and low iron. It's a shame if they can't be tested, but are you supplementing those? You can't over-dose on B12, but you can on iron, so I would really nag and nag until you get that tested. They really should be doing that because it's so important to have good levels of iron. And it's necessary for you to be able to use the levo your taking.
What sort of side-effects did you get with the HC?
I am not sure I could have butter because of the cream etc - I do have a reaction to cream, buttermilk etc, but I will swap from Sunflower to olive and see what difference that makes.
I do supplement with a Vitamin B complex, The doctor did test the Iron serum which came back in range, but their are differen't types of Iron tests isn't there?
I went to pick up my prescription of liquid T4 after work and to my shock the pharamist had opened my medication and decanted half into another bottle and gave me just half, I asked why, he said I had already had 50ml which I picked up last week, this was not the case, so reluctantly he gave me the rest with the plastic stopper and syringe - it is quite clear that as soon as the bottle is opened then you only have two months to use it, so with him opening it before I needed it has reduced how long I can keep the medication, he also got the ladies medication who was next to me wrong, I am quite concerned really, he has been their a long time now and their alway seems to be a problem.
With the HC i was burning up, having the shakes, pains in the chest, a lot of pain, feeling dizzy and sick, headaches, blurred vision etc - all the sorts of things I would get with taking the Thyroid meds.
It would be helpful for my adrenals if I could get some sleep, i tend to get about three hours sleep a night, sometimes seems less, and easing my chest pains/breathing would also make things a bit easier
Well, it could be your exhausted adrenals causing your bad sleep.
Such a shame about the butter! But do ditch that horrible margerine. It isn't doing you any good.
A B complex is no use if you are seriously low on B12. You need to get it tested.
And just being 'in range' with the iron isn't good enough, it should be at least mid-range. Doctors have no idea about this! And he should have at least tested your ferritin. He really sounds a pretty bad doctor.
That is terrible about the pharmacist! But, in my experience, you can't trust any of them. I've had lots of problems when I had prescriptions, and they just Don't care! When they make a mistake, they joke about it! You've got to keep your eye on them all the time. They are pretty ignorant in the main.
I will certainly change from margarine. my Serum Ferritin was - 69ng/mL - Range 13.00 - 150.00, and the Serum Vitamin B12 = 924 pg/mL - Range 197 - 866 - do you think they are ok?
I completely agree with you about doctors and pharmacists. I hobbled into the pharmacists and asked for something for fibro pain, she kept saying go and see the doctor, in the end I said "I have, whats the point" she huffed and puffed then told me to take a mixture of pain killers - 12 a day, well that's no good for my stomach, and always just masking the problem - their is a reason for such pain.
I do have lots of buffered vitamin C with Rosehips & bioflavidnoids - 1000mg tablets normally I have four a day but when things are really bad i have 6 or even 8.
I do use sea salt now in my cooking but could probably increase it.
I am still in two minds whether it would be worth my trying a differen't thyroid medication, the tablets are always in bottles of 100 and their are customs charges etc so you are easily looking at £110.00 and most probably going down the drain.
I have implemented a few changes, trying to do things a bit more gradually, so I don't cause anymore stress on my body.
The B12 is fine. The ferritin isn't bad but could perhaps be a bit higher.
It's true that it is quite a lay-out for something that might not suit. But unless you try them, you're never going to know. Besides 100 at one a day, that's just over three months - less if you try increasing, which is a fair try for something new. You can't know if something works without giving it a fair try.
Might be a good idea to increase your salt intake. Google the adrenal cocktail. People take it last thing at night to improve their sleep.
I have printed of the adrenal cocktail recipe and will give that a whirl to, their is also the early morning pick up with organic lemons and I will try that too - marvelous - thank you very much.
How much salt can I have before it starts causing problems in other area's - I was always told that salt was bad news.
Usually most tablets will be wasted, i only used about seven of the westhyroid pure tablets and the rest went in the bin.
I would like to try some others but with all the problems I have had with the meds I have come to the conclusion that I will never be able to tolerate it - whatever brand.
Yes, we've all been told that! But it's like cholesterol - we've all been taken for a huge expensive ride to the benefit of Big Pharma and Big food. Have a look at these :
I don't know how much you can take without it being harmful, but I doubt you'd be able to tolerate the taste of such a high dose. So take as much as you can tolerate.
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TSH still high even on T4? Also High MHCH
