Hi all, it's been some time since my last post and am feeling desperate.
I am Hypothyroid and was taking 100mg, ( thats less than one grain ) which my Compound pharmacy makes up for me. Even though it is a low doze it does eventually bring my readings up to a reasonable level, in other words, according to the Dr, normal level, but this is my problem. I have to keep stopping it because of worsening symptoms of my Adrenal Exhaustion ? my Dr tells me that I cannot stop medication due to fear of my going into heart failure or other probs. I have just gone back on it due to the terrible tiredness even though i do feel so much better. I should have explained first that i suffer with Fibromyalgia also, and this is what improves when off medication. How on earth do i manage all of this ?? have tried to manage symptoms with diet alone but found that so difficult as there are so many foods i cannot eat as it is because i am also Celiac. I have persisted with Keto diet as much as i can because of improvement with symptoms but was losing way to much weight. I am only a size 8 and was dropping to a 6, and was looking way to gaunt. Have now just continued with avoiding all Nightshade vegetables and as much sugar as possible, also cut right back on rice. So sorry this is such a long post and don't know why i have left this problem go on for so long without seeking help on here. Can anybody give insight please. Help
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recovered7
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Can you add your most recent blood test results and ranges?
Presumably as you are coeliac, the cause of your hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised.
Low vitamins are extremely likely as you are coeliac too
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If/when also on T3, or NDT make sure to take last dose 8-12 hours prior to test
Is this how you do your tests?
What vitamin supplements do you take?
If you are in the U.K Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
I think we would need to see your blood test results before being able to help in any way. But, if you keep stopping your levo, they're probably going to say you're under-medicated, anyway.
I'm a bit of a non-believer when it comes to fibro. It's far more likely that you just have an under-treated thyroid condition rather than you have the two diseases at the same time. And, I would hazard a guess that it's not your fibro improving when you stop your levo, but the well-known phenomena of people feeling better when they stop their levo. It happens to just about everybody when they stop their levo, and the effects can last for quite a while before the hypo symptoms start creeping in again.
What puzzles me is why you keep stopping it. What are the 'worsening symptoms of adrenal fatigue'? And how do you know that it's your adrenals and not just under-medicated thyroid? And, if you have adrenal fatigue, what are you doing about it?
But, as I said, we really need to see your results before trying to come to any conclusions.
I keep stopping the NDT because of worsening pain and lethargy, simply cannot function. Apparently, according to the Specialist i saw, the Adrenal Exhaustion is what triggers the Fibromyalgia. I belong to Fibro Australia as i live in Australia. When my thyroid was at optimum levels i did not improve with the pain and exhaustion at all. I am Hypothyroid due to having Radioactive Iodine 10 years ago. What is so puzzling about all of this is that i wasn't medicated for an underactive thyroid until 5 years after the Radiation as my levels were normal. All so confusing as the Endo said i may not necessarily go under at all. I am taking supplements and always have due to inadequate diet. I am on Strong B Complex with high dozes off all B vitamins plus minerals, Omega3,6, Magnesium, Vit C high dozes in powder form , Vitamin D , have been taking all of these for several years now and my B12 normal levels. And what can i do for Adrenal Fatigue ?? nobody has ever told me i can do anything about it other than avoid stress and take extra Magnesium if needed. The specialist said there was nothing they could do to help it other than put me on an Antidepressant ??
When my thyroid was at optimum levels i did not improve with the pain and exhaustion at all.
If your pain and exhaustion did not improve, then your thyroid was not optimal. Optimal is not a number in a range, it is the way you feel. If you still have hypo symptoms then your dose is not high enough. And, it's because doctors don't understand that, that fibro was invented.
I am Hypothyroid due to having Radioactive Iodine 10 years ago. What is so puzzling about all of this is that i wasn't medicated for an underactive thyroid until 5 years after the Radiation as my levels were normal.
RAI does not necessarily kill the whole thyroid immediately, it depends on the dose. But, it's possible for the thyroid to slowly fail afterwards. So, that's obviously what happened.
Taking antidepressants will do nothing for your adrenals, that's silly. But, it depends on how low your cortisol levels are, what you do for it. Have you had a 24 hour saliva cortisol test? If so, post the results and ranges.
As a general rule, adrenals do need optimal nutrients, so good job you're taking them. But, they also need plenty of rest and plenty of salt - do you get enough salt? And, plenty of good protein - a high protein breakfast as soon as you get up. Do you have adrenal support supplements in Australia? The type with dried adrenal glands?
I keep stopping the NDT because of worsening pain and lethargy, simply cannot function.
Are you taking commercial-type NDT - Armour, or something? - or is it specially formulated for you? Do you have copies of your labs: TSH, FT4 and FT3? If so, post them here, with the ranges and let's have a look. Could be that you are just under-medicated. Being under-medicated will cause pain and lethargy. But, doctors don't always understand how to dose.
You have always been such a help to me Greygoose, thankyou.
1, Majority of people involved with Fibromyalgia Australia do not have Thyroid problems ? normal thyroid function. I was diagnosed with Fibrisitis in my teens, ( Fibromyalgia is the new name ) and was having heat treatment for it which worked very well for me and still does ) so have had Fibro for many many years, but am open minded on this topic still.
2. Thankyou so much for giving me that answer on the RAI, nobody has ever been able to tell me why this was the reason i was never medicated at the time i had RAI.
My Cortisol levels have been checked so many times by different Dr's and specialists, always have come back normal, and good range, but have never had Saliva test done and would not know how or where this is done here ? but a good point.
3. I do eat extra sea salt for this problem. What do you call a high protein breakfast ? i cannot eat eggs, so that is out so tried making Almond meal toast but it knocked me out dead within 30 minutes of eating it so had to knock that on the head. Almond meal is very high in Protein. I have never hear of supplements for Adrenals so am very interested in this.
4. I am taking NDT which is made up in a Compound Pharmacy from the pigs thyroid, very expensive, but have found it effective in bringing up my levels . I will post my last test result just have to find it. My T3 has always been excellent. I tried upping the doze of NDT and was completely crippled with pain and distress. Dr lam, whom specializes in Adrenal Exhaustion says its best to take small dozes to take it up gradually in order to take pressure of Adrenals.
My Last tests were done 6 months ago.
T4 : 9.3 normal ref range ( 10.0 - 19.0 )
TSH 14.0 ............ ..... ( 0.50 - 4.00 )
T3 : 3.5 ..................... ( 3.5 - 6.5 )
At the time of these tests i had been off meds for 3 months, so not much help i wouldn't imagine. I did go back on them only to have to stop again due to severe pain.
1. Yes, I do understand that a lot of fibro sufferers think their thyroid is optimal - but do they really know what optimal is? Is it just their doctor's opinion? And just because you were diagnosed with fibro before being diagnosed with hypo, doesn't mean that you have fibro. Doctors use fibro as a convenient get-out when they have no idea what's wrong with you. So, I'm always dubious. Given that there are no tests for fibro, I think it's difficult to prove.
2. Did you actually see the results of your cortisol tests? Or do you just take your doctors' word for it? For most doctors, everything is perfect if it's just in-range.
I don't know if you can get a saliva cortisol test in Australia. You would have to ask your doctors, I'm afraid.
3. What sort of a diet do you eat? Gluten-free and dairy-free, obviously. Are you vegetarian? It's difficult to advise someone what a high protein breakfast is, without knowing what sort of protein they eat. Plus, myself, I can only stomach a little bread and butter and tea, in the morning, and the sight of what some people call breakfast turns my stomach! People eat all sorts of things, fish and rice, for example, avocados, things that I just couldn't contemplate. I can't even contemplate an egg in the morning. But, I don't think I'd like almond meal toast, either. My stomach is very conventional! You could google foods that have a high protein content and find something that would suit you. But, the adrenals need protein in the morning.
4. Dr lam is perfectly correct. Everybody should start all hormones low and work up slowly, whether you have adrenal problems or not. The thing is to keep going. Have you not considered that perhaps that compounded NDT doesn't suit you? Do you know what the fillers are? Have you tried anything else to see if it suits you better? You really aren't doing yourself any favours keep stopping and starting your hormone like that.
No, those labs are of no use at all. Have you not had any since?
Hi Greygoose, Yes, breakfast is an individual thing i agree and would love to be able to have eggs but two bits of toast with lashings of butter and sometimes Peanut butter, until i read this was a no no for good thyroid function, so i also follow the diet for thyroid . When you are in severe pain and cannot function you will do anything for relief, ( well, almost ) and its relief within three days of stopping my medication. Dr, Lam also suggests that staying off Thyroid meds for a break to help Adrenals heal was sometimes a must which is where i got this information from and whom i was following, but now a little unsure. I have tried Levo and could not tolerate it used to sit staring blankly into space and crying, YUK, hated the stuff it affected me so negatively, husband was frantic with the Dr in regard to putting me back on it. Rice flour is the filler they are using and it is all Gluten free, and the caps are Vegi caps as cannot tolerate the other, Cellulose .
Thank you for your help, it's been so appreciated and accept i am a difficult case which embarrasses me so much. I also have a Brain Tumor but am so grateful it is Benign and only a Meningioma . Nobody seems concerned with this finding so i'm not either. I feel as though i am to be thrown into the too hard basket and left with God to deal with . Thank you all so much will just scurry along as best i can. Bless you.
Woah there! Peanut butter a no-no for thyroid function? Where did you get that? It's a very good source of protein. And on toast with lashings of butter makes and excellent high-protein breakfast - if you're not gluten-free. Besides, I don't suppose your thyroid has much function anymore, anyway. Don't be put off good food by old wives' tales. As long as the peanut butter has good ingredients, it's fine - but beware of artificial sweeteners.
I have tried Levo and could not tolerate it
OK, so let's explore that a bit. What exactly was wrong with levo? Could you not convert it? Or, was it perhaps the fillers - did you try different brands? Or, is it that you just can't tolerate T4? Like me. If that's the case, then NDT is going to make you feel bad because it contains a lot of T4. Is it perhaps possible that you need to be on T3 only - at least for a while, until things straighten out? That's the only way I survive.
Please don't be embarrassed by being a difficult case. I was one, too, and I threw some fits in doctors surgeries when I couldn't get any help, you cannot imagine! But, I'm not embarrassed. I was just trying to survive - don't we all!
Have you tested your TSH, Free T4, and Free T3. The fact that fibro, cfs and ME could be due to 'thyroid hormone resistance'. I will see if I can find a link I had. Levothyroxine is T4 alone and is an inactive hormone. It has to convert to T3. T3 is the Active thyroid hormone and we have millions of T3 receptor cells and all need T3. It is an archived site as Dr Lowe died through an accident.
I have never gained weight which is interesting for somebody that is Hypothyroid, and i lose on NDT but for the first time in my life i gained 3kg within a couple of weeks of starting Levo, terrified me and it kept creeping up, so grateful to have lost it since changing to NDT. Levo made me sick and spaced out and full of anxiety. Horrid.
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help!
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Please can anyone advise me
