Hi. I have Hashimoto thyroid disease for 11 years and was on Levothyroxine varying quantities over the 11 years as thyroid keeps alternating. I have been very unwell for 5 months. So much so my muscles that weak I could not walk. I could not sit at a table to eat or hold a knife and fork. My life basically came to a halt. I’ve spent 5 months house bound, only this week I can walk and stand without losing my balance or legs caving under me
One thing I have tried to do recently in all this is change my Levothyroxine 75mcg daily to NDT privately prescribed to 1 grain/tab 60mg daily.
I have just had my first test results back after 8 weeks on NDT. I feel better in my strength but still no where near back to normal. Could I have your thoughts on these results received today please
T4 7.7 (range 7.86 - 14.41)
TSH 4.96 (range 0.35 - 5.50)
T3 4.80 (range 3.7 - 6.0)
9am Cortisol 261 (range 155-600)
My previous bloods with Levothyroxine back in May this year I collapsed and was on 999 to hospital
T4 13.6
TSH 0.22
T3 3.90
Cortisol 68 in afternoon
From May results above the Endocronologist at Chester Hospital said I had no endocrine issues and sent me to cardio ward where they found no issues.
Your thoughts would be very helpful as my GP is calling me soon.
My kindest regards
Pam
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McPammy
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It looks like you could do with increasing your NDT, your TSH is too high and your FT3 has a fair way it can go.
I don't know much about cortisol testing, unless it's the 24 hour saliva test, so can't comment I'm afraid. Have you thought about doing the saliva test with Regenerus, the saliva test is supposed to be better
Thank you so very much for your quick reply. Do think my Dr would increase even if TSH is within their range please. I actually feel overactive. Can’t sleep very well and very edgey too.
Your results definitely aren't showing that you are overmedicated. When taking NDT it's usual for TSH to be low, even suppressed, FT4 would often be low and if optimally medicated then FT3 would likely be in the upper part of the range. Your results show undermedication.
If your doctor knows anything at all about treating with any thyroid hormone, then they should know that a TSH of 4.96 is way too high for a treated hypo patient.
I have thought of saliva test but Drs don’t seem to want to know. They are only interested in your 9am results. Which I have a problem with as mine is always in the low side and by 6pm is way below the range. It’s a real battle is really is.
If your morning cortisol is low and your your 6pm level is below range, then your doctor should be addressing this. Has your doctor acknowledged these results? Have you questioned the below range evening cortisol?
Yes I have several times. There have been multiple times my cortisol has been under the range. But as all occasions are after 9am they will not do anything to help. My ACTH, signal from brain to adrenals, has also been out of range at 0.5 ( range is 2-11). I had a insulin stress test organised by Endo. A few days prior to the test he called me saying he has cancelled it, without any reason. I was very disappointed as you can imagine. Endo then sent me down the neurologist route. I’ve seen 2 neurologist and both say I have no neurological issues. One said it is metabolic.
I keep going round in circles with this for past 5 months in a dreadful state.
I have chased up why the IST was cancelled and waiting to hear on that.
I’ve seen as few Drs. None know what to do. My own gut feeling is that it is Endocrine. I’m in the process of finding a new Endo. The last one just seemed to not want to know, or he didn’t know. He said he’d not seen anything like this in his 15 years. He is a Professor too. The hospital he works from is diabetes focused and not a centre of excellence. So I’m trying to find an Endo that will help me from a centre of excellence hospital maybe.
Last week I lost my job over this, as I am a contractor. Life can’t get much worse. I haven’t been paid either since April. As being a Ltd Co contractor you have to wait 28 weeks before you can get financial help too. What a damn mess. I’m keeping positive!!!
It is stated that NDT is usually stated in 'grains' i.e. 1 gr is equal (approx) in its 'effect to 100mcg of levothyroxine.
It is usual when we start on NDT, that we increase by 1/4 tablet every six weeks until we are symptom-free. Take puls/temp too, several times a day when increasing and if either go too high drop to previous dose.
The following was written by one of our deceased Advisers.
I don't know where the 1 grain = 100mcg levo came from as it doesn't work out like that if you take the amounts of T4 and T3 in a grain. More like 65-75mcg levo-equivalent.
Hi. Thank you for your quick reply. This is truly appreciated. I’m a little confused as I was on 75 Levothyroxine. My private Endo said 1 grain 60mg = 75mcg Levo. Maybe he’s wrong then? All he said was start with 1 grain 60mg and stop Levothyroxine. It has been tough to say the least swapping. If anything I feel overactive as I’m not sleeping very well, have fluttering in my chest and very edgey too. I hope as thinking I may need to lower the NDT but then looking at my results my T4 is low and TSH high. Do you know what the optimum level should be for TSH please.
I expect that endo was a diabetes specialist - most of them are - and was only looking at your TSH, and unable to understand that it was that low because you were on levo, not because you didn't have a thyroid problem.
Your latest tests show that you do have a thyroid problem, because your TSH is too high, and you need an increase in dose.
Hi, you are correct the Endo was a diabetic Endo and sort of pushed me onto the next Dr in cardio.
Looking at the May results would it suggest I wasn’t converting properly?
Would the Dr increase if TSH was in their range. It is st the top end I agree. I actually feel overactive as I can’t sleep too good. Dehydration and fluttering in chest. I’m also very edgey.
It would suggest that you are a poor converter, yes.
You can't predict what doctors will and won't do. They seem to act on whims, usually no logic to it. But, then, they don't have the basic knowledge of thyroid to base their decisions on. It's all a bit haphazard.
Just because you can't sleep, doesn't mean you're 'over-active' - you can't be over-active, anyway, because you're under-active, and the thyroid doesn't skip around like that. You could be over-medicated, but you aren't. Many symptoms cross over from hypo to hyper so relying on symptoms is fraught with hazard. Which is why we need labs to back up the way we feel. I think what you're experiencing is under-medication.
Have you had vitamin D, folate, ferritin and B12 tested recently?
Very often extremely low with Hashimoto's. Do you take any vitamin supplements
Low vitamin levels often result in low TSH when on Levothyroxine despite being under medicated
And as you have Hashimoto's then are you on strictly gluten free diet
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Yes, I’m on B12 loading now as it was under. My vit D was 54 in March, above the range. And it was 94 repleat after a 2 week sunny holiday in April. I’m waiting for ferritin and folate results.
I’ve started a gluten free diet recently. I really didn’t know I should be on gluten free until I read posts on here. I feel like I’m doing and trying everything to get better
Something happened to me in Feb 2017. Severe headache then soon afterwards I could hardly walk. It went away after 10 days. Dr thought it was a virus then. Then May 2018 I could hardly walk again. Then all my muscles virtually stopped functioning. Even my throat, face, eyes and chest effected. My cortisol was low, my TSH was very low, my heart rate in 40’s and ACTH low. I felt as though my body was shutting down. No Dr seems to be able to pin point what has gone wrong. Then I couldn’t tolerate Levothyroxine anymore. I stopped taking thyroxine for a week. It was like a miracle, all my symptoms had gone and I could walk and do things as normal. I had to restart Levothyroxine. In doing so I was back to square one and all muscles effected again. I’m getting a bit better the past week. I really don’t know why or if this ‘thing’ may return.
I’m sorry for going on. It’s been a long hard road. In all my 12 years of taking Levothyroxine I’ve never experienced these symptoms.
The glaring problem seems to be your low cortisol. Your ACTH is so low. Why haven't they done a pituitary MRI? The ACTH is low and so it's a wonder you have as much cortisol as you do. An MRI of your adrenal glands would be a good idea too. But seriously, your ACTH test should've been flagged, along with poor cortisol results. Low cortisol causes so much weakness in your body. I mean you can barely get on/off the toilet they're so weak. I think you need to find a new doctor.
Hi. Thank you! I think you’re dead right. I did have a head MRI and pituitary was OK. I was booked in for a insulin stress test to see where weak signal was coming from re my low ACTH level of 0.5. Was it hypothalamus or pituitary?? My Endo cancelled my test a few days before it was due with no explanation!! I’ve since chased this up with my GP and trying to get it rebooked. I started on NDT 8 weeks ago and I’ve certainly improved. Maybe it’s been a T3 conversion thing also. I’ve heard out of balance thyroid can also effect your cortisol results too. I had a 9am cortisol yest last week and it was 250. Much better but could be better. Maybe when my TSH if 4.86 has improved to around 1.0. My cortisol may get better too. I’ve been left to my own devices on all of this. You are right I couldn’t get on the toilet or get off it. I had to get about the house on my hands and knees or my partner dragging me wrapped in a blanket along the wood floor!! NHS is appallingly.
ACTH comes from the Pituitary. Now why in the world is the doc even proposing insulin stress test from low ACTH? Insulin is your pancreas. Oh yes, a dismal cortisol number will def leave you in pain and weakness. If your ACTH is below normal, how in the world can you even produce Cortisol? Unbelievable. No ACTH means No Cortisol. The only thing I suspect that can hinder ACTH production is perhaps an adrenal adenoma. Have you ever had you gut MRI'd? You've had your Pit MRI, now they need to do your adrenal glands. If they find an adrenal adenoma, that's the culprit. Believe me. I went 10 years with one and doctors telling me "Oh we see that all the time, no big deal". Oh yes, it's a big deal alright. Will really screw you up. Once the adrenal gland was removed, my ACTH returned to normal operation. Problem is, the other adrenal gland that was deprived of ACTH stimulation for a decade or longer, is sluggish. It is very hard to take thyroid medication when your cortisol is not normal. This is why every insert in thyroid medication states Contraindicated in those with adrenal insufficiency.
Hi. I think the insulin stress test puts your body under stress by reducing your sugars then your body responds. They then take timed blood samples to determine if the hypothalamus or pituitary are sending weak signals. I thought this to be a crucial test ref my cortisol bring low. ACTH was already recorded under range at 0.5 (2-11). Barely detectable! Why the Endo cancelled it without reason I’ll never know. My GP has wrote to the Endo twice with no reply as to why it was cancelled. He wrote again this week and to ask if I could have a trial of T3 as I need it. We all know the story on T3 but if one needs it you should be able to have it. I’ve lost my job over all this so I can’t afford private anymore now. The plights of being a contractor these days.
I agree I certainly do need a new Endo. I’m waiting patiently for a report back from a Dr I am under at the John Radcliffe Hospital to see where I’m best going from there.
Thank you for your valued support. I am truly appreciative for sure. I just cannot believe how bad I got and no help as yet!!
That test, just forget it. The glaring problem is below normal ACTH. If the Pituitary is not secreted enough ACTH, then the adrenal glands will not produce cortisol. My ACTH was zero, but I still produced normal cortisol. It was because I had an adrenal adenoma. As soon as the adenoma/adrenal gland was removed, my ACTH went right back to work. Something is inhibiting the ACTH and that is what the doc needs to find out. Did you once say you had an MRI of your Pituitary?
Yes I had a head MRI. They said the pituitary was ok. But yes I do believe something is wrong and has caused me several months of severe weakness for sure. I’m seeing my GP on Monday to try and get somewhere and to change my Endo prof as I’ve lost faith in him for sure.
While looking up that test, it says that it can be a dangerous test to take. Your doc already knows your cortisol is a bit dismal, and he could potentially put you in a dangerous position, to which, according to this Wikipedia page, does require medical staff to be present, as it can bring on a coma or put you into adrenal crisis. Now I understand why he wanted to give you this test. Maybe he cancelled because he was afraid to give it to you knowing darn well your cortisol is low. en.wikipedia.org/wiki/Insul...
Yes, find a new doctor. This one doesn't seem interested in helping you, but you obviously need help.
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