Hi there everyone! Just wondering if any of you peeps out there have had experience of major blood pressure swings on levothyroxine.
Mine has a tendency to be really low generally and at times so much so that I feel like I'm falling. Doctor has referred me to heart specialist, but if I increase my levothyroxine, my heart rate and bp go up, but still have sudden drops. so… Any ideas?
I'm currently on alternate days of 150/125 and last blood tests were (taken 24 hrs after last dose):
TSH : 1.21 (0.27 - 4.20)
FT4: 23 (12.0 - 22.0)
FT3: 4.3. (3.10 - 6.80)
I also get terrible joint pain and feel really really low most of the time. Often struggling to put a sentence together or to think straight.
I've just started taking iron, b12 and vitamin d in the hope that that might help.
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woofa27
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Does it matter if the ft4 is over range if the ft3 is low?
I'm 56 and just on the teetering on the edge of the menopause - could this be my problem?
I asked the doctor if the blood pressure issues could be the menopause and the only advice he had in relation to the blood pressure was to drink more water😯, but did refer me to the heart specialists.
I've only just restarted taking vits as new year resolution. I'm taking:
Sorry this has taken a while to unearth most 'recent' results. Tried to get retest end of last year, but was told Iron had been done too recently and that they don't retest vitamin d (too expensive) and b12 is in range.
Just thinking, what about trying low dose naltroxene, would that be worth a punt? And do the blood pressure swings sound like thyroid issues in your experience? Sorry to still be asking questions and thank you again
I had no idea about licorice perturbing blood pressure and nor did I know that most of my herbal teas had licorice quite high up in the ingredients list. I was having about 4 tea infusions a day thinking they were better for me than coffee and normal tea.
Herbal teas are disgusting! Taste like boiled paper unless there's liquorice or ginger in them so it's probably quite a high chance for liquorice to be present. Anything is worth a try and switching to decaf tea/coffee will at least give your taste buds a holiday.
You are so right! There are some awful herbal tasting teas out there. I've settled on mint and thym tea ... and I do my own ginger infusions which I swear by for bloating and inflammation of joints. Hoping that none of these have a contrindication for thyroid. Seem ok for blood pressure though.
😬 didn't do brilliantly well with that. Good point, should try that again, life was throwing some stonking big curve balls at me last year and that kind of went by the wayside. Will give it another go - I did listen, honest! 🙃 Thank you again SlowDragon 😄
I can no longer tolerate my FT4 levels being top of range or even 80% in range. The more I tried to push it higher I developed a lot of debilitating symptoms like the ones you mentioned. All of this can affect the appetite. low calories/carbs leads to a higher TSH. I had the same results as yourself with a high FT4 and a TSH still over 1. On Levothyroxine alone I could never get my TSH lower or my FT3 levels up where they needed to be. Low ferritin levels only made worse my thyroid issues. On top of that I had low B12. After a year of correcting those issues I still wasn't able to get enough T3 on Levothyroxine alone so three months ago decided to give T3 only a try. It was really a last resort but if you're on a high amount of Levothyroxine, correct vitamin and nutritional deficiencies, and still have a TSH over 1 and low T3 you may want to consider adding T3. I take Thorne iron 100 - 150mg every other day and then test every 4 weeks. It took close to 4 weeks for the iron to help the dizziness. When I was on Levo only and had low FT3 levels my BP was lower and I was dizzy yet if I increase it becomes high and I start getting sweaty and dizzy, my heart rate goes up.
I must apologise jrbarnes, I did start replying to you and then something must have happened cos I don't seem to have made any comment or thanked you. It sometimes feels like I've got dementia or something, everything has defo gone a bit PETE TONG! But thank you, who knows what's going on, I sure as heck don't! Thank you though, but adding T3 if you live in the UK ain't that easy 🙁. Hope you're feeling better yourself and thank you!
I forget quite a lot! It's terrible that T3 is difficult to get in the UK and I hope that changes. Was on Levothyroxine for ten year and didn't know Liothyronine existed! First six years on Levo went okay then suddenly all down hill. It has taken me three years to unfold this "mystery." Hope you also get well.
Roseway Labs, in the UK, now have a prescribing service. For approx. £30 you can have a consultation over the phone with their prescribing doctor and tell them why you want to try T3. I'm sure you would have no problem getting a prescription to trial it that way. You buy the T3 from them too. It's easy and not too expensive now. This is a new service. I used it in early November. If you do this and can get the T3 to help you, you can then go back to your GP later on and put your case forward for being prescribed T3 on the NHS. Might not be successful but you at least have a way of getting it if you can afford to pay for it.
Seriously?! That sounds amazing! Thank you soo much for that fancypants54. I'd never have believed there'd ever be such a service available in the uk!!!! That's definitely going onto my (now pretty long) list of things to try 😀👍🤞
This is interesting as I have just discovered I have low BP through a medical check at work. Since having RAI I have suffered with tinnitus when I take vitamin D (or sit in the sun) or eat certain foods like porridge. I have just realised that they both lower blood pressure and I think it's related. Since going on a health kick and stopping drinking alcohol my tinnitus is constant. Only really used to hear it when I woke up in the night, now makes sense as blood pressure drops at night. I think my iron is low so going to ask to get my iron checked, which obviously could be a cause of low BP but never thought about levo originally lowering blood pressure.
Hiya Hookie01 - hope you get to the bottom of your low blood pressure too! I'll let you know if I find the answer. The NHS don't seem to think low bp is an issue… well it is if you're the one who's got it! Good luck! ☘️
NHS don’t think a lot of things are a problem! AND there are a lot of things they think are a problem which are not! When my T4 was over range and I was acting as if I had cerebral palsy (what I did to rectify this was not in anyway enlightening) I could not even sit up, could not hold anything, really limbs out of control etc etc my GP said “Your TSH is 0.43 you are fine, you have plenty to play with.” It was the utter lack of care that got to me. Not just the lack of knowledge. That was my final thread of trust gone.
Yeah, it's a pile of pants! (That's the polite version). I was referred to an endocrinologist at one point and all she did was ask my history in the appointment, wait about 8 weeks and then send a letter stating: "I see from the patient's records that her levels are within range and she's now on anti-depressants and so I'm now going to discharge her. " Gee, thanks! Not ONE word of advice or suggestion of how to improve my situation.
My husband's comment:
"I THOUGHT YOU SAW AN ENDOCRINOLOGIST, NOT A COMEDIAN!"
No, thankfully not, she was NHS. Sadly I think everyone's hands are tied by the bureaucratic guidelines and economic constraints of what is a great institution on one level, full of many hard-working and caring individuals who are doing their absolute best against all the odds, but a system which is sadly broken nonetheless. ☹️
Just thinking that your symptoms could also be adrenal related. Do you tend to like or crave salty foods? Or feel much more tired in the afternoon and end of day? Is the dizziness more pronounced when you stand up and a regular occurrence? Do you tend to have regular headaches? If so it might be worth querying your adrenal function with your GP.
I've always been a bit of a salt junky and in the last couple of weeks seem to have pretty much a permanent headache. The dizziness is more like a sudden drop and it can happen at any time, but is more pronounced when I get up from sitting or lying down and yes it is a regular occurrence.
I have lived my entire adult life in a highly strung state of anxious desperation (probably like most people!). My poor little adrenal glands are almost certainly on their last legs, they've been working like troopers for decades.
My GP did morning cortisol levels last year which was deemed "acceptable - no action" at 370 nmol/L (no range given). Do you know what can be done about low adrenals anyway? Thanks caledonian cat 😺
Anything over 350 nmol/L is deemed ok by the medical profession but it doesn't necessarily mean it is. If you wish to supplement for the adrenals it would be useful to know circadian levels/patterns.
Highest cortisol output is supposed to be in the morning to help us wake, and gently lower in a spoon shaped curve until bed time. However, compromised adrenals start secreting cortisol at all different times of the day (adrenaline too) and then this new pattern becomes our norm. A saliva test taken at four separate timings over 24 hours gives you a more comprehensive overview and you will be able to see if levels are jumping up and down, and supplement appropriately.
Does it matter if the ft4 is over range if the ft3 is low?
It can do as the body may turn this excess into inactive metabolites that risks lowering future T4 - T3 conversion. As SD has pointed out you are a poor converter of T3. My story is much the same as many on here with previous high FT4 levels making me ill and FT3 always too low to ever achieve wellbeing. If you can’t get T3 prescribed you can always self-source and self medicate with help from the forum like many of us have had to do. Adequate FT3 might also help improve possible low adrenal reserve and stabilise your BP too.
Interesting chat below regarding sex hormones and I agree with PCOS you most likely need some progesterone, especially with possible adrenal issues that should take over sequestering as ovarian failure occurs. I would be getting oestrogen and progesterone levels checked as you may be able to get HRT on the NHS with your history. HRT made my thyroid hormones work so much better.
But first it would be prudent to get iron and nutrient levels tested in order to address any deficiencies as this may very well encourage better conversion and higher FT3 levels in itself.
Thank you Radd for such an in depth response. My new year's resolution is to attempt to become a fully functioning human being! It's a long shot, but who knows?! 🤫🤞😀
Joint pain and feeling low suggests it's time to look into your sex hormone levels.... thought this was a great answer from posthinking01 about the link between thyroid and HRT
4 months ago
Hmm now there's a question and the very same one I asked myself when everything else didn't seem to result in total 'wellness'. I might have to go on a bit about this subject to actually show you how I also came to the same conclusion.
I believe I have had a problem with 'my thyroid or at least something' all my life - as a child always tired - muscle aches etc. etc. - however was the 'something' my adrenal glands not firing properly.
I worked this out by looking back - felt amazing when pregnant and amazing when on the pill - I mean changed my life - full of energy felt so well - underlying there were other day to day things but the energy was fantastic. It was when I was told to change the pill to a lower dose that things went wrong. I suddenly - after being someone who could eat anything and I mean anything - I would not put on weight - I was 8 stone 4 lbs and it never changed. My Dr. was shocked when she saw how I had 'blown' up' (I now know that was a cortisol bloat) she immediately put me back on the higher dose and I lost the weight. Unfortunately during the time I had come off the higher pill I had grown a fibroid and eventually after a couple of years where it grew quite large I had to have a hysterectomy (ovaries retained). I was never the same after that. I looked dreadful like an old lady - I was 33 - my skin was parched and dry and wrinkled it was awful. I was distraught - particularly as the surgeon would not admit I needed oestrogen - eventually after about 2 years of really suffering I went on oestrogen only prescribed by a lady Dr. Energy back skin plump and young looking and great energy.
Everything was fine until I reached 50 and the menopause and it has taken me a lot of research to work out what was going on. I suddenly went from 8.4 stone to 16 stones rapidly - I looked like the Michelin Man - it cost me my career - I could no longer work as I could not get into any work clothes with an abdomen the size of full term pregnancy.
Finally after 15 years - my blood tests were always showing normal range - I was put on thyroid hormone - and I still took the oestrogen only gel. But I never got back to how I used to look or even felt and the battle now commenced.
I told myself I have two bookcases here full of books on the thyroid and adrenals - and somewhere within those books and the internet was the answer.
I came to find out that possibly the oestrogen had caused a problem with the thyroid – but only when I got to 50 ? why was that !
I then found out that the adrenal glands – the sex hormones – supply oestrogen – progesterone and cortisol and many other hormones. The adrenal glands are supposed to supply the additional need of hormones when the ovaries stop producing at menopause – hence why so many women have problems with the menopause – the ones who don’t, just have good adrenal gland function. If someone has had a thyroid problem for many years then they have been using ‘adrenal energy’ rather than thyroid energy hence why at 50 etc. they get problems – no ‘extra’ within the adrenal gland function to supply the oestrogen progesterone etc.
After reading – progesterone deficiency was causing most if not all of my symptoms – including the fibroids and lactose intolerance would you believe – I was prescribed progesterone tablets – they did not agree with me and caused my breast tissue to swell – I stopped the tablets – let’s try again – use a cream but only a tiny amount- same thing breast tissue swelling. It had to be that the progesterone pathway was either not getting through or was blocked. After being amazed that carbs – protein etc. were metabolised by the adrenal glands and experiencing digestive issues that made me aware I had a problem in that area. I worked out the following – that the sex hormones within the adrenal glands were faulty – so it isn’t actually a deficiency of progesterone per se but a deficiency within the adrenal glands to supply the amounts needed for the body via that gland.
They say that high oestrogen levels cause breast cancer – I don’t believe this I believe it is low progesterone not balancing out the oestrogen levels – and I did get a Dr. to agree with me on this.
I am now on adrenal support - having to take steroids but the sex hormone issue has not resolved itself obviously, as cortisol steroids I now know will suppress progesterone – and energy levels are still very low and the thyroid isn’t balanced.
I am now on a mission to sort out the sex hormones and have found what is possibly the problem but not sure I should recommend this to others as I do not want to be responsible for people using something that might not suit them other than by medical practitioner. So yes you are maybe right that in your case progesterone could be involved as indeed I found out to my cost. But a word of advice – IF you do use progesterone products and your breasts swell up – in my opinion you should stop taking immediately.
Quote “ Oestrogen triggers your thyroid to create thyroglobulin, a thyroid precursor hormone. Too little oestrogen will result in too little thyroglobulin, while too much oestrogen can cause too much thyroglobulin creating an enlarged thyroid.
Stress: The most common cause of low progesterone levels is high stress levels. During a stressful time of worry and concern, such as that of pregnancy, the body produces a stress hormone known as cortisol. This hormone may prevent production and actions of the progesterone. “ Unquote
johnleemd.com/ (John Lee was the guru for Progesterone therapy)
Hiya Eeyore 100. Thanks for your reply and yes I'm in complete agreement, those pesky hormones. In fact, it was when diagnosed with pcos that i was put on levothyroxine - so I know I have an imbalance. But I'm not 'officially" menopausal yet, so no HRT for me!
If I could only turn the clocks back, I would never have agreed to go on levothyroxine. If I knew everything I know now, I would simply have focused on rebalancing the female hormones. It was never really my thyroid that was the problem per se, but it sure is now! Too late for me now 'cos the menopause are calling, but maybe Marion Gluck's site, which I came across the other day, might help someone else before they become an NHS approved levothyroxine junkie.
I wouldn't wait, starting whilst in the perimenopause could save you a whole heap of issues... the NHS just like to leave things until you are in crisis, like you say PCOS suggests you have been lacking progesterone
hi woofa, I have three friends who take oestrogen gel as hrt from their gp and they are peri menopausal. I think it is now recognised that hrt can begin before your cycle finishes. Good advice from Eeyore!
Heck no, if you go to a menopause/ wellwoman clinic they work with you based on your symptoms and give you the options available that suit you, they are fully aware that the issues start 10 or 20 years before you finally reach menopause. Once you have what you need sorted out they then contact your GP and pass the prescribing over to them to continue. Well worth it 🤗I would never have got sorted just dealing with the GP... they very unwillingly supply my testosterone too, which was a total eye opener to them along with the body identical HRT's available
'Oestrogen triggers your thyroid to create thyroglobulin, a thyroid precursor hormone. Too little oestrogen will result in too little thyroglobulin, while too much oestrogen can cause too much thyroglobulin creating an enlarged thyroid'.
Yes, because it is thyroglobulin that (synthesized by thyroid epithelial cells) is then broken down to release thyroid hormones to be taken up by TBG and transported around the body.
However, this quote refers to a healthy working thyroid gland and not those with an absence of a thyroid gland. Even a partially working gland will get hammered as thyroglobulin together with the iodine transporter, thyroid peroxidase and thyroglobulin is all TSH driven, which is often low/suppressed dictated by adequate meds.
Also increasing oestrogen may increase TBG levels that risks binding thyroid hormone. HRT gels aren't suppose to have this effect but if many pumps are applied, the excess recycled still has to go through the liver and some members have reported needing a med increase after starting/increasing HRT
Interestingly this ties up with my findings, when first introducing HRT I needed a small increase in T4, before adding in T3 I experimented with extra transdermal estrogen for a couple of weeks and it further supressed my already poor conversion of T4 as you say likely due to raising TBG levels, not at all scientifically done and I have no actual idea what state my thyroid is in as no one has ever bothered to examine it 🙄
hi Eeyore, may I say what a well written post that was! So interesting, it’s such a complicated subject to understand especially when you’re in it. I too wish I knew then what I know now! Thank you, your research will help many I’m sure.
Thanks, but I absolutely take no credit other than passing it on posthinking01 was the OP and I thought it was brilliant too.... like you say when you're in it you don't have the cognitive ability to work it out and stupidly assume that the GP is doing their best for you 😳
"They say that high oestrogen levels cause breast cancer – I don’t believe this I believe it is low progesterone not balancing out the oestrogen levels – and I did get a Dr. to agree with me on this."
No, this is not correct with up to date thinking. Oestrogen has been vilified for this, but there has been a turnaround on it. The likely "cause" of hormone sensitive breast cancer is now thought to be progestogens. It is important to use body identical progesterone Utrogestan as part of HRT treatment, with oestrogen. A lot of the progesterone information on the internet is very out of date now.
Seek out information from Chelsea and Westminster's Dr Nick Panay, probably the UK's most senior menopause expert (he's interviewed a number of times on YT by Diane Danzebrink on there Menopause Maters web site, and read/listen to all you can about the subject on the balance-menopause web site written by Dr Louise Newson. That is bang up to date information.
Taking oral oestrogen has always had a slight risk for blood clots and is known to lower thyroid results for patients on medication. Not by a lot, but some. A small dose increase is usually required to counter this. Because of the clot risk many HRT specialists are now using transdermal HRT products. These are not supposed to lower thyroid results in the same way as tablets. But I have found that they can. This could be because I have never found optimal for my thyroid. But it's worth keeping in mind. Again a small increase of thyroid meds should rectify this.
Transdermal HRT also has the potential to be less reliable, absorption wise, for us hypos if we have dry, flaky and unresponsive skin. I have suffered oestrogen levels dipping because of this. After trying all the transdermal products I hit on Lenzetto spray as the most reliable for absorption but still a bit up and down. I decided to move to Bijuve, which is a body identical oestrogen and Utrogestan progesterone capsule. The first of it's kind. And bam! It works for me. No more flaky absorption issues.
After reading your post and replies I thought I’d just reiterate what someone else mentioned but put emphasis on it. Your ft4 is too high.
All the symptoms you mention are same as mine when EITHER over or under medicated.
In the first instance, if it was me, I would drop my levo to get my ft4 around 18. See how I feel. Then add some t3.
I trialled t3 before but realise that of equal importance for my body is t4.
Recently had a blip where I felt all those symptoms you mentioned and thought I was under medicated. I did a test and my ft4 had raised to 22. I haven’t established what caused this yet but others will agree that over medication symptoms can be same as under medication symptoms.
Drop your levo slightly and see how you feel in a few weeks.
Beginning to think you might be right, as after the 150 dose my temperature is lower the next morning (35.9) and my headache worse and my joint pain worse and hands and feet even more icy cold; tight sore throat and wheezing. I've also been crying uncontrollably ALOT - but that's another story!!!! But during the day my body temeperature has been actually been a bit better, even reaching 36.5!!!!!!!!!!!!!!! at one point the other day. But I feel appalling. I've always felt like my energy levels go in waves like I suddenly run out of t3 and have to build it up again; then I run out and then build it up and so on - just how it feels to me. But I have been thinking about trying a dose reduction before anything else. The question now is: dose reduction or dose splitting - sadly, if I'm honest, I'm terrified of both!
But i really appreciate the good luck wishes Yeswithasmile... think we could all do with a bit of that!!!! Thank you!
Dose was 150 yesterday and feel really really ill, headachy and shakey today, as though I was suffering from severe alcohol poisoning, which sadly I'm not!!!!!
oh woofa! That’s sounds similar to what I have suffered from up until recently. They were migraines but I refused to admit it because they felt like my whole system was detoxing from some kind of poisoning? I have since become aware of the relationship between thyriod and gallbladder. The lady who gave me acupuncture for the migraines told me she was working on my gallbladder meridian.
That set me off on researching the subject, and I found a sluggish thyroid can lead to a sluggish gallbladder and if it doesn’t empty on every meal it can mean you don’t absorb the fat soluble vitamins such as A,D,E and K. Hence an imbalance in hormone production and digestion.
Furthermore, bile is useful for ridding the body of toxins. I felt that my bile was not emptying for a period of time, then suddenly the stagnant bile emptied thus poisoning my system. May sound far fetched to some but I have taken to massaging my liver and any tender areas regularly to help keep things moving and I have been well now for a few months so fingers crossed. I hope you don’t suffer as I have it has been awful, good luck with it.
so…. Don’t be scared. It seems you couldn’t feel much worse! Personally I think it’s a good place to start.
I believe that the vits etc that SD mentioned are very important too but I’d drop my levo as well. We are all different are respond differently but if you do a slight drop I’m sure you’ll be pleased within a few weeks. Don’t panic if you get odd things whilst you do drop. When I raise or drop I get palpations and switch between other symptoms but it’s short lived.
Lastly, I’m early 50’s and always suffered with low pressure and low heart rate as you mentioned. When better medicated they both improve. I stopped combo treatment a year ago and can say that I felt so much better on levo only with ft4 around 17 -18 regardless of my ft3 level. Low or high ft4 and I feel terrible. Once I knew where that needed to be I was able to start dealing with ft3.
Of course I wish you luck 😊 it can be a long difficult road to find better thyroid health but you can do it!! x.
🙏 Thank you for taking the time to reply to me. I feel so so so so sad and absolutely shattered beyond all comprehension this afternoon. But I am going to try dose reduction and weirdly it's today on the lower dose 125 day that I have hyper like symptoms, trembling hands, and such; tight neck; sore throat, head doesn't feel quite as bad this afternoon, but still headachy. But it really does feel each day as though I get a small window of not feeling quite so bad for a short period about 2-3 hours after taking my levothyroxine and from then on it's a up and down, but mostly downhill ride. To me, it feels as though the one hit is the only time my body has vaguely what it needs and then the rest of the time I really do feel like I'm just living off nervous energy.
Thank you all for your support 🤞 as you say, hopefully it can only get better.
Some people can be very sensitive but some aren’t. I don’t think I am to a different daily dose. I was a bit like you and taking 125, 4 days and 150 for 3 days. I’ve just lowered mine by dropping the 150 doses to 125. I’m hoping this works but I will test in a few more weeks to see before deciding where to go from there.
After wasting a year on a combo treatment of levo and liothyronine I learnt my lesson the hard way. I felt absolutely dire. Staring again with levo only, a year ago has enabled me to see what ft4 level I need before I over medicated and get symptoms back again. The I hope the the liothyronine helps with the other symptoms.
Pain is my worst and first symptom and that is definitely helped by finding the right ft4 level.
You need to give a Levo dose reduction days before you might notice any difference because of it's long half-life.
It's taken me a long time, but finally I too understand that too much Levo or T3 make me feel as bad, and even worse, than too little. The symptoms are the same too and now I understand why. It's complicated. But I learned about it from the Thyroid Patients Canada blog site. Excellent information there. For some of us, the protective device of Enzyme D3, which is there to convert excess thyroid hormone into T2 and push it on the pathway to exiting the body, is rather sensitive to hormones we swallow and kicks in at lower hormone levels. So for me if my FT4 is over range I feel awful too because the D3 enzyme has effectively spotted the higher hormone and neutralised it. So I am running on too little hormone. This defence mechanism is great at stopping us getting hyper for some reason, but hopeless unless understood, when trying to optimise treatment.
As a result of understanding what my body does with higher levels of hormone I now increase by no more than 12.5mcg of Levo if I'm using it. And as soon as I start to feel like you describe, I reduce back down again to a point where the feelings improve. Your FT3 will never improve if your FT4 is being converted to the inactive T2. I also experiment with splitting the dose to see if lower individual doses can sneak past the D3 enzyme and not trigger it. Once triggered it takes about 12 hours to settle back down again.
All this to say that I too think a reduction in dose is the place you need to start.
I also suffer from low BP, and it can go right down in reaction to challenges, such as extreme heat, stress, intravenous interventions. The many endocrinologists I saw didn’t believe me that there was anything wrong with my BP, so I got my GP to refer me to cardiology for a table tilt test, which then confirmed that I had a low blood pressure problem. Also what was useful was a 24 hour BP monitor from the GP. I also have my own blood pressure machine now so I can keep an eye on my BP. I’m now on Fludrocortisone, a steroid, for low BP, (also used for Addison’s disease), which has been transformative. If your adrenals are struggling, it may be your aldosterone that’s low, which is produced by the adrenals to mainly control your BP and salt and other electrolytes. Sometimes the aldosterone can be more affected than the cortisol levels. I think that the Levothyroxine may lower my BP a bit, but I think it may be because it speeds up your metabolism, so the body’s clearance of adrenal hormones increases.
Hope that helps. I think the doctor’s are so focussed on people with high blood pressure and all it’s ramifications, that they don’t take low BP seriously enough, and it’s a really horrible problem. It can make you feel weak and nauseas, and I found it particularly bad at night, when your BP naturally goes lower anyway. It can depress your breathing and make you dehydrated. I hope you get it sorted and feel better soon.
Thanks Bluejourney, yeah, I have to say, night time can be especially bad, sometimes I find I'm really struggling to get enough air and it can be quite scary. A tilt test is what the dr said I was being referred for, but no appointments are available at the mo, but I guess I'll get there eventually 🤞
Have you had your electrolytes tested? If you think you’re getting dehydrated it helps to add a bit a bit more salt in your diet, and drinking diarrolyte can also help, especially if you’ve been sweating. Before I started on the Fludrocortisone, I’m pretty sure my blood volume would go down. All in all, it makes you feel pretty bad. Also, as it was much worse at night I found that no-one wanted to test my blood then, because of course phlebotomy was closed, and by the morning I felt better and my blood tests were normal. What is really needed is overnight blood testing, but of course no-one wants to pay for that!
I had my electrolytes tested a while back and they came back normal, but I can be pretty sure things are out of kilter 'cos I get cramp every evening. I'd forgotten about good old dioralyte. That's a good plan! I'm reluctant to add salt in isolation of the other electrolytes, simply 'cos I seem to hold extra water in my arms and legs (some might call it fat! But I prefer the water theory!)😜
Do you think that your cramps were due to electrolyte imbalance due to low thyroid - strikes me that's quite likely. My temperature drops to 35.5 overnight (my gp told me "some people are like that"), but surely is that's a typical low thyroid symptom - low body temp, cramps and slow heart rate, isn't it?
I think the cramps were caused by getting dehydrated through the night. I’d wake up in the morning with cramps, dry eyes, dry mouth. I’d be weeing a lot in the night as well. All a lot improved with Fludrocortisone and a higher dose of Levothyroxine.
Something else I find helps with the low BP is slow, deep diaphragmatic breathing for 5 minutes or so. It oxygenates your blood and makes you feel better.
Will try the breathing. And your dehydration theory would tie in with the doctor's advice and, when I think about it, I definitely seemed to suffer more cramps and joint pain during that first really hot summer in lockdown, when I could never seem to drink quite enough water, so think you make a very good point.
I also stumbled across some clever person on this site who had a recipe for an adrenal support drink, which kind of sounds like an electrolytes/dioralyte equivalent type drink, so I'm going to give that a go (orange juice, salt and cream of tartar). I can't seem to find the original post, sorry to whichever of you knowledgable people it was, but if any one else wants to give it a try, there's a recipe at stopthethyroidmadness.com/a....
I know I should probably test my levels first, but I can't think a couple of weeks drinking this twice a day could do me much harm?! I'll let people know how it goes. 🙃
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