I’ve tried Levo, t3 (combo and mono of both!) NDT and they all make me severely unwell with low blood pressure and dangerously low blood sugars (worse after eating!) as well as a load of other awful intolerable symptoms (crippling joint and muscle pain, severe fatigue, short term memory loss etc etc)I’m also deathly pale and puffy the whole time I take meds. These all calm when meds are stop but I’m left feeling awful in other ways then!
So what now? Am I just screwed?
Should I be looking at other causes of raised TSH?
Last trial of thyroid medication has left me with a severely reduced appetite and uncomfortable fullness after eating so now I struggle to eat anything. Currently surviving on 2 pieces of toast and half a bowl of pasta in the evenings.
My partner wants me to go back to the gp but at this stage I don’t really see the point…what would they even be able to do for me? (Apart from gaslight me and unfairly label me as a anxious hypochondriac)
Wondering if it’s worth arranging for a synacthen and some thorough adrenal testing privately?
Not in the best frame of mind right now so probably shouldn’t even be posting…
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I understand there is no quick fix but I can’t take any thyroid medication if they make me dangerously ill. I’ve tried varying doseages, brand, formulations, combinations over the last 2 years and they are all the exact same. I can’t function with a blood sugars of 2.7 or below
Ft4 is always at 16-17 and t3 around 4.5-5.5, regardless of where my tsh is at the results are always around here.
I’m not hashis confirmed via US and bloods.
My vits are all pretty good right now and still the problem persists.
Testing always done following the protocol here.
I honestly don’t think I have a thyroid problem…I feel something else is going on given my overall symptoms/health and my sudden deterioration whenever thyroid meds are started.
Can you please post thyroid lab results to include the all important reference ranges....
What symptoms did you have that made you feel dangerously ill?
What dose(s) of thyroid hormones were you taking and how did your symptoms correspond with those?
Who has been treating you.... GP or self medication?
How about asking your GP to be referred to an endocrinologist with a view to having a Short Synachten Test.....I did that several years ago, it's straightforward.
Ah sorry forgot ranges - ft4 range is 12-22 and ft3 3.1-6.8.
I have seen a gp for treatment and then went private to trial t3 combo/mono and ndt.
In terms of the things that make me feel seriously ill…my blood pressure will go low 90/50 and my blood sugars will drop 2.7mmol is the lowest I’ve recorded but often it’s hard to keep it above 4mmol…at these times I feel almost drunk, am unable to stand or speak properly. I also completely lose my appetite on the meds and struggle to eat a full meal or much of anything which means I lose weight really fast (and I’m already on the low end of normal weight) I often wake in the night and am unsteady and dizzy and have to sit over the loo to be sick (tmi) sorry! I also randomly have majorly aggressive allergy symptoms on all thyroid meds (not an issue for me usually!) I have chronic wheezing and shortness of breath not relieved by inhalers, blotchy rashes and puffy sore eyes and face. My muscles feel stiff and almost bruised all over which means I struggle to get around. There’s probabaly some stuff I’m missing (brain fog!) but I think those are the main things.
All of this stuff either goes away completely or calm significantly without the meds.
I told my Gp about blood sugar and they just did diabetes bloods that were normal.
I do have a lot of the symptoms of low cortisol I feel but I don’t have tan or anything like in Addisons. My nhs endo was going to arrange a synacthen but they messed me around all last year and it didn’t happen in the end. They will not see me again now until 2026
Also I forgot to add…when taking thyroid meds (any kind) I have the most intolerable agonising restless legs. To the point that they hurt and keep me awake at night. It’s so awful and not something I have an issue with off the meds.
Upon a quick google it looks as low cortisol can also be to blame for this?🤔
I definitely know it’s not my iron…even when my ferritin is great the issue persists on thyroid meds but slowly goes away once stopped. Hmmm.
DD Thank You for Validating that TSH is Not the Be All. FT4 and FT3 are the Best Markers. But my reservations are with the Ranges. Who sets what the Ranges should be. Many do much Better with higher ranges either FT3 or FT4 and Dr's become ballistic when they see lab results like that.. And immediately reduce the dosages. Making the patient unwell again.As long as the patient feels well live and let live. The markers should be Based on how the patient Feels.
We are all different with different needs and symptoms are important
Ranges are set roughly as follows and are calculated for each test machine, so they can vary slightly
"The normal range of thyroid function tests is determined by measuring Free T4 and TSH levels in a population of healthy adults with no thyroid problems. Those results in the middle 95% are considered the normal range; the 2.5% above these levels and the 2.5% below these levels are considered abnormal."
DD Thank You For your Very Kind Reply. To be honest with you I don't know when I had my once healthy Thyroids what my FT4 and FT3 were. That said . Now that my thyroids come from a bottle I think and I can be wrong that our thyroid ranges might be different. I think not having any longer my thyroids that my needs might require higher doses and that might just change the Ranges for me. Is it possible that patients that no longer have Thyroids the Ranges ought to be readjusted ????
It's just a way of comparing a patient's results with those of the healthy population....results outside the range are a red flag
The reference range is standard, it's what all results are compared to.....the individual's results may be over range suggesting over medication....or vice versa
The individual's result may vary but the reference range stays the same
The so called normal range is generally defined with a confidence interval of 95%. This means that if you measure a certain parameter (for example T4) in a large population, 95% of this population would fall into the established normal range. However, 2.5% of the population would fall below the established range and 2.5% would fall above this range. As there are very few that would fall outside the 95% range, they are seen as outliers and therefore 'cut off' as to not skew the range.
It does not necessarily mean that these results are abnormal, it just means that the majority of people (95%) would be within that normal range.
interesting, thank you for sharing. My ft4 is always at 16/17...even back when I felt 'well' it doesn't matter is my TSH is 1 or 8 my T4 is always at 16/17. I feel this is my sweet spot but either something is sending TSH high for some reason OR something is intermittently messing up my conversion to FT3.
yes,in Dr Peatfields book how to keep your thyroid healthy he recommends testing adrenals before starting treatment as low cortisol causes side effects to medications , low blood sugars and low blood pressure are symptoms of poor adrenal function
I’m in a similar situation to you in terms of intolerance to thyroid replacement, despite tirelessly optimising vitamins and minerals. I have a synacthen test scheduled for next month and have been withholding HRT in preparation for that. In the course of arming myself with as much info as possible, I came across an article which established a link between Addison’s/Adrenal Insufficiency and slightly raised TSH:
“Thyroid-stimulating Hormone
A slight elevation of thyroid stimulating hormone (TSH) level can occur in adrenal insufficiency due to decreased cortisol levels and abnormal TSH circadian rhythm.[29] If TSH elevation persists, clinicians should consider the possibility of hypothyroidism.”
In terms of trying to get an appointment for a synacthen test in the shortest possible time, have you ever tried exercising ‘patient choice’? I’ll be honest, I haven’t personally tried it but I’ve read of forum users having success with researching the shortest waiting lists at hospitals within a distance they’re willing to travel to.
I hope you’re surviving without your hormones. I’m dreading it but if I don’t go through 6 weeks of hell I may never get answers!
Interesting study you share! Symptoms of low cortisol/adrenal insufficiency seem quite similar to hypothyroidism too.
I’m hoping new endo will also be willing to rule out an adrenal condition ‘late onset adrenal hyperplasia’ which is very similar to PCOS (which I have a diagnosis for at the moment but all the PCOS treatments we’ve tried have caused more problems than solutions!)
‘Levo & Lio both appear to send my prolactin, SHBG way too high (prolactin in 1000's and SHBG 200+) and drop my testosterone too low.’
Sounds like you need your pituitary hormones and cortisol tested as it looks like they’re being compromised by thyroid hormone GTS, and you certainly won’t get any help from your gp on that. Have you ever tested your adrenals? I’m in the same boat as you.
No adrenal testing as I’m on the contraceptive pill (for other longstanding hormone issues, eg never having a period etc) but I think I’m going to speak with someone privately and stop the pill to get the adrenal testing as that hasn’t been done. No pituitary scan either…
I think it would be worthwhile getting it done. You could do a morning cortisol blood test at home, I’ve just done one, but it’s just a snapshot, you really need a short synacthen test and only an endo can order that. There’s a few other tests you could have, but start with cortisol as that’s the one that causes the biggest problem adapting to thyroid hormone if it’s low.
Just a thought GTS, the bcp can have an effect on thyroid and cortisol, have you stopped/started it at any point? Stopping and/or starting could alter tsh.
I feel better on it as have other complex hormone issues…stopped it for a year and never had periods and was so unwell I couldn’t function.
I’ve stopped it for 6-8 weeks at times over the last few years with and without thyroid medication and if anything my response to thyroid meds without OCP is oddly much worse.
I’ve never had natural periods so it’s not really a long term option to stop the pill but I’m going to stop it for adrenal testing. HRT trial was a disaster.
Testing shows my TSH and thyroid levels are the same both on and off of the pill.
Cortisol will always appear vastly over range (even when it isn’t!) on OCP I was told.
Just something caught my eye in your description. Re: back to your GP.
I have just myself come to the conclusion that I was put off following my rightful (IMHO) quest for health through many years of being disbelieved, gaslit etc etc. Indeed visiting A&E yet again this weekend, something quite incredible happened. I have just had quite significant surgery, which even my surgeon connected to my hypothyroidism. A complete first!
I was concerned about some distracting physical sensations I was experiencing. Having just had a procedure a week ago, I can tell you, suddenly I was treated with great care.
However during the chat two things came up.
1.) How long were you having angina pains before the surgery?
My reply “25 years plus”. Shock and quickly disbelief by the doctor and then a bit of embarrassment as she realised I had spotted her unguarded reaction.
2.) How then have you managed your ….. Can’t remember the word she used because I did not understand it (in my life)! We got to understand each other around basically how did I manage to get around. How far could I walk when the pain came on? My reply around 100 yards or even less as things continued to get worse.
This time only the shock registered on her face.
Her reply was “I am sure you know more about hypothyroidism than me. I am embarrassed that I don’t know any of this”.
OMG such honesty I have never experienced with a medic.
What I want to say here is twofold. Why are we forced to be embarrassed into silence by their incapability to comprehend our ‘story’? I feel I was granted special permission to say clearly how it was for me under those ‘special’ circumstances, post procedure. Why only now?
No GreensealTeal. It’s time we tell it how it is and get them to understand it’s they who should be getting held to account for their ignorance around thyroid issues or indeed whatever our ailment is/becomes.
Don’t be gaslit etc. I have wasted too many years of my life because of their utter ignorance/arrogance. Don’t let it happen to you.
Just as an aside, it’s crazy to me that I had to get as far as a cardiac surgeon before I found a doctor who (quite blasé) was aware of the connection of heart and thyroid.
No Gp, no endocrinologist, and no cardiologist was knowledgeable enough to work out what was happening or indeed willing to find out, or most importantly treat.
There is something very wrong (as we all know here on the Forum) in our system of medicine.
We are constantly left to our own devices. Hypothyroidism just does not stir the senses of our medics.
Get back to your GP in no uncertain terms and tell them it’s their job to find out what is going on. It’s what they get paid for. If they can’t help it’s then their job to find someone who does know! Again you might find this annoys them very much - they mostly seem to hate being ‘found out’. Persistence I know is necessary. It’s in short supply when you constantly feel ill.
Unfortunately I just shut up and got on with it. I have no idea how I have survived (only 6% of my main entry arteries allowing blood into my heart). The number of times spent in A&E getting a patronising pat on the head “It’s only palpitations”.
It’s got to stop. This is a ridiculous state of affairs.
thanks for your reply and no worries about the rant.
Problem is I don’t think it’s that they can’t comprehend my story…it’s that they don’t believe me.
If I go back again and make a fuss I will just be unfairly diagnosed with ‘fibromyalgia’ or ‘CFS’ which I don’t have.
I’m already on the list for a follow up with the endocrinologist, beyond that what more can they do? I don’t feel a GP is qualified to comment as this point…
NHS Endo will find you don’t have addisons after a short synacthen test, they will disregard symptoms including very low /underange thyroid/ DHEA/testosterone, my androgen index was so low it was undetectable- nothing to see here, it’s all in your head, despite having low acth and a cortisol reading of 216 - your fine, it’s not Addisons. Off you go.
Go private and choose carefully you’re not a standard case.
GTS - I’ve been given a couple of names by DM of private endos who specialise in central hypo, I think one of them is also nhs, don’t know the area off hand but I can dm you the details. Both come highly recommended and I can give you the posters name so you can see their history/speak to them.
Thanks Jamima, yes please! that would actually be very helpful. I’m based in London but can travel!
I saw one private endo last year and he was so rude and dismissive and he just blamed my weight for everything ( I have always had a low in range bmi and this is normal for me) it’s gotten lower in recent years due to digestive issues and just general loss of appetite but that wasn’t grasped at all in the appointment!
He even said he wouldn’t be concerned with me conceiving at this stage (with a TSH of 7!!!) so I’m not sure I trust his opinion on anything tbh.
This is when we need to learn to push back and challenge doctors who don't know what they are talking about: How did you come to that recommendation? Could you show me your resources?
Personally, I'm trying to learn to be more assertive with the doctors but somehow I don't seem to be that eloquent and quick in thinking when I'm seeing the doctor face to face. When my GP told me, my TSH is suppressed, I'm overmedicated and that I should revert back to my dosage, I wasn't able to think quick enough to question him what the TSH is measuring exactly, and shouldn't we look at T4(which was in the lower range) and measure T3 (which is not being measured?).
Oh absolutely. I knew I wouldn’t be seeing him again when he finished the appointment by accusing me of ‘being someone who worries and wants all their blood numbers to look perfect’ like no I have some abnormal test results and I feel really unwell…that’s why I’m here😭
You are not alone! My GP insinuated something similar when he advised me to reduce my dosage to the lower dosage when I had fatigue and other symptoms, saying it could be due to mental health issue. And then he went on to backtrack and say, but I'm not saying it is...😅
It's like they don't understand: who wants to go and visit the doctor when they are perfectly well? The reason why we are here is, we want to feel well and do more things!!!
He’s a rather young doctor with limited experience but felt emboldened by the recommendations of senior doctor and endocrinologists 😅 As he wasn’t overly pushy, I didn’t want to argue with him but I have to admit I did bring my husband along in case there were more serious pushbacks…
Nothing surprises me anymore with endos, but there are some gems, it's just finding them! I'm not suggesting you have central hypo, rather these endos are open to pituitary issues and investigating them over diabetes issues full stop. I'll send the names over now.
You are correct about GP’s qualifications. CFS has a more distinct diagnosis these days. There are questions you/the GP must answer. My GP did not even ask me the questions after the wide ranging blood tests necessary for diagnosis. Presumably saw that she just did not have the evidence and went no further. Fibromyalgia is a non diagnosis. It’s a dead end. Would you consider your symptoms ‘fibromyalgia? Really think about that. Don’t put it in their lazy heads.
Not believing is exactly what has happened to me. Multiple times. You really don’t want/need to go as far as me. My life was literally on the line.
I admit I found it hard to be ‘reasonable’. I spoiled umpteen opportunities to be reasonable, being emotional. It’s almost impossible in the face of their ignorance/arrogance. And yet we must.
It’s not as if at the moment there is an obvious alternative from what you are saying, other than waiting for an endo appointment and they seem to be just as clueless.
Perhaps I am just feeling thoroughly vindicated at the moment. Dangerous ground in itself.
I’ve read a lot about the criteria and symptoms of CFS and o absolutely don’t fit the criteria. Seems like my gp considers it the same as fibro. I don’t really have consistent symptoms of either so I refute any suggestion of either
Also thanks arTistapple after thinking about it today you have made me realise I do need to log this with the GP and see if they will ‘help’ My partner also thinks I should go to the GP even if they’re no help!
I just noticed that you have toast and pasta so wondered if this is affecting you. Lots of thyroid sufferers seem to be intolerant of gluten rather than coeliac and feel better when it's limited. Karen
I used to eat gluten free and the result is the same sadly.
Having plain toast and pasta at the moment because it’s all I can stomach really. I find fibre also makes my digestive issues worse so I really am very limited.
I’m not convinced hypothyroidism is my main issue here either…especially as I drop weight so incredibly quickly!
Just a thought as some things sounded similar to my starting point. Might you have low stomach acid? I reacted to most meds within 5 -10mins , weird sensations, head spin, legs buckling, odd pains, nausea ,hives, slurry speech, odd vision etc etc.
A few years ago Dr Myhill offered a saliva VEGF test to check for low stomach acid, sadly no longer available, but it showed me to be borderline achlorhydria. It took 6 months to gradually build this up gently with Betaine HCL to only then an acceptable in range on the follow up test. But it made a huge difference to allowing me to persevere with meds and foods.
I wouldnt say Ive sorted or cracked it yet, still a working progress.
Just wondered if Betaine and or Digestive Enzymes carefully taken might be of help to you .
Hello thank you for replying!! Defo something to consider but I’d be surprised because I do appear to absorb both meds and supplements reasonably well going by bloods.
The symptoms build and get worse the longer I take the pills, in the first day they’re actually reasonably mild. But everyone is so different aren’t they, it could be possible!?
I’ll do some reading as I haven’t heard of this. Did you suffer hypoglycaemia/hypotension? Those I find the scariest symptoms to deal with!
Did you find address the stomach acid allowed you to take your meds?
Within an hour of taking the meds I’m white as a sheet and feel sick to my stomach but the first day I can kinda get by but if I stick it out in waking in the night to be sick and feel so dizzy and unstable on my feet.
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