Help help help help.....I am low in energy, ach... - Thyroid UK

Thyroid UK

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Help help help help.....I am low in energy, aching muscles and all sorts of symptoms from my thyroid condition...can you help me?


I am currently self medicating with 4 grain NDT ( I was on 125mg of levothyroxine and 20mg of t3) as my doctor has left me feeling symptoms. I have requested to my doctor to do full thyroid test and I have only recieved my TSH and T4 results.I dont know what my t3 results are either. So my TSH is 0.05 and my t4 is 12.2. the normal range for my tsh is 0.20 to 5.00 and my normal range for t4 is 9.0-21.0. I feel exhausted, i am over sleeping, i feel depressed, suicidal, unable to go out and do stuff without feeling like i need to sleep. i cant exercise as i dont have the energy to do so i just feel completely f(((((ked!!!!! I lost a stone and a half on the t3 and t4 combo. I was a size 14 2 years ago and now i am a size 22. i miss my size 14 figure, my face and body looks swollen and its horrible. i look ugly as hell! i suffer from myxedema ( hypothyroidism). how the hell do i get rid of the excess weight? I spoke to my doctor about prescribing pig thyroid medicine and he said he would do it for me but he is on holiday for a month. Other doctors will not prescribe it. what do i do? do i increase the meds myself?

23 Replies

ok do i risk being hyperthyroid?

do i cut it down?


Are those the results from after starting on NDT? Or were they from 125mcg Levo and 20mcg Lio?

HypoHippo in reply to Hidden

starting on ndt


It's a pity you don't have FT3 results. But as far as FT4 goes, 12.2 is low in range. There's a good chance you are still hypo. Difficult to suggest what to do. My partner Kate takes 4 grains of NDT and occasionally takes a little more Lio when feeling really rough. She has been known to take 5 grains but that did turn out to be too much. But everyone's different.

Did you have an FT3 test? If not, could you afford to have it done privately? Blue Horizon do a FT3 only test - a test you can do at home using a finger prick.


Oh, and another thought... Do you know what your Vit D, ferritin and Vit B12 levels are? If any of those are out of whack, you're likely to feel rough - you need all 3 to optimise how your body uses thyroid hormones.

nope dont know my vit d, ferritin and b12 but i am supplementing. my iron level is 202 and my doctor said my iron levels are high

im in reciept of state benefits so i am unable to afford treatment privately

Blake in reply to HypoHippo

Just convince your doc to give the the right tests, FT3, FT4, REVERSE T3. The way I found a doctor to cooperate was I called all the ones that take Medicare and I asked if they have any patients on doses as high as 4 or 5. If they said no, only 1 or 2 grains I passed. I hope that helps. (The really important one you should save up for that probably will be out of pocket is the 24 hour saliva cortisol test. Its about $125 USD and you order it online. (I will probably never see this thread again, so you can PM me if you would like help finding that) You really really need that if you ever want to get it right. If you have adrenal issues, the NDT will never work. That happened to me. I was up to 4 grains, and not any better. I have hideous Reverse t3 problems due to iron. So now I'm on a combination of T3 only, and NDT. That works for allot and there's a face book group for that that's of great help

helvellaAdministrator in reply to Blake

With only one exception that I know of (research at one university hospital - unless I dreamed that), the NHS does not do reverse T3 tests.

Private rT3 tests are expensive - the one I checked was over £110 plus other costs. I don't think it reasonable to push someone on benefits to afford that sort of money.

Indeed, regardless of need, few people here get FT4 tests on demand and even fewer get FT3 tests at all. Ever.


Blake in reply to helvella

Well, I'm sorry that few people there are getting FT3 and FT4. That just underscores that the doctors are ignorant in treatment. I also see allot of people complaining that they don't feel good. Then how about calling a bunch of doctors in that program and finding one that does do those tests? How about bringin the STTM book into his office and begging him? Maybe educate him a little? Ive done that with success before. Anyway, you know what you need. I'm from the US, so its hard to imagine worse doctors, but I suppose its possible. So I do understand its a fight and I sympathize with you. I'm not trying to push Reverse T3 tests on anyone so it's not unreasonable because I don't really care what you do. I'm just reminding you (in case you didnt already know) that that's what you need. Actually it's not expensive for them because they need the FT3 already to get the RT3. Too bad they have to make it such a hassle for us. I know you can get these tests online without a prescription too..But the thyroid panel is in the 200-300 USD range. All the best

Hypo, I think you might be blocking some hormone. Do you think you have adrenal issues?

I have several other articles bookmarked if you think this could be the reason why you are still so ill.

(you said: spoke to my doctor about prescribing pig thyroid medicine. NDT usually is pig hormone so what are you taking right now?)

HypoHippo in reply to Heloise

im taking NDT right now. I will get that checked to see if i have adrenal problems

Heloise in reply to HypoHippo

It seems the saliva test is the only reliable one for adrenal issues and we aren't talking about Addison's Disease. If you read that article, you see what cortisol can do to your thyroid hormone.

Here is more..

HH, there is simple check for adrenal issues which Dr BDP uses and it costs you nothing. If you do not already have a Blood Pressure monitor, then you could get one for relatively little money, about £15.99.

It could not be more simple. Take your BP sitting down, stand up and then take it again immediately. If it falls when standing, then your adrenals are struggling. You have "Postural Hypotension". If it rises when you stand, that is normal. If one falls and the other rises, you are borderline. I saw Dr BDP and he assured me that it is as reliable as an expensive saliva test.

The scientific reason behind this test is simple. When you stand up, your BP naturally falls and this is compensated for by the adrenals, since it needs to rise to ensure a sufficient blood supply to the head. If the adrenals are exhausted due to long-term thyroid deficiency, then they are unable to compensate as they should, hence the BP drop.

"•DIZZINESS (POSTURAL HYPOTENSION): When a person stands from a sitting or lying position, the systolic blood pressure usually rises about 10 points as blood vessels in the lower body constrict to force blood to the heart, lungs and brain. This is a result of the action of epinephrine on the blood vessels. In people with adrenal fatigue, the blood vessels are unable to respond to the release of epinephrine because of lack of cortisol, so blood pools in the abdomen and pelvis and blood pressure drops. This systolic drop ranges from 10 to 40 points and is present in over 90% of those with hypoadrenia. Dizziness is usually present on standing; however, in some people it is present intermittently or constantly throughout the day as even resting blood pressure is low. Paradoxically, in order to prevent pooling of blood in the abdomen and lower extremities, the body may keep blood pressure extremely elevated. Pressure will still drop when the person stands but only to around 150. Remember, it may have been 180 or higher before standing. Treating the adrenals will lower blood pressure whereas anti-hypertensives and diuretics will make the adrenal problems worse in many cases."

Learn more:

If you have established that you have low adrenal function, then the next step would be to discover the cause. The most likely cause in an individual with hypothyroidism is insufficient T3 in the system which causes the adrenals to try to compensate, and over a long period of time they become exhausted and unable to compensate any more. This is why so often people feel fine for a time on T4-containing medication, only to discover that after a time the medication seems to stop working. The real truth is that it wasn't working but the adrenals were compensating. The proof of this is that the other symptoms remain but the patient seems to have more energy for a while.

They keep trying different forms of T4-containing meds only to find it isn't working. The root causes of all these problems are possibly that the T4 is not being converted to T3 so there just isn't enough T3 around. You would need to check all the trace elements and the vitamins especially iron/ferritin/folate and vitamins D and B12. Deficiencies in these can prevent adequate conversion. Addressing these can solve the problem.

In many cases, a move to T3-only will help, especially if the CT3M is used (taking the T3 at times when the adrenals need to produce cortisol, thus giving them the T3 they need to function)

A further option is to add Nutri Adrenal to your regime, but this can be expensive. Since you have already been on a T4/T3 combo, would your endo be willing to let you go on T3 only?

Marie XX

Marz in reply to marram

Great post Marie....

I agree, very informative post. It's really helped me to understand adrenal fatigue, thank you! x

janer560 in reply to marram

Thanks for all that info Marie. Very informative and useful.


Blake in reply to marram

Thats really good, I forgot about that, I remember hearing that one..Thank you for posting.


You must be so disappointed when you've changed from levo to NDT and still suffering. There have been good replies to you. I will only say that previously you were on 125mcg levo and 20mcg of T3 - equal to around 225mcg thyroid hormone.

With 4 grains NDT that's the equivalent of 400 mcg. Is it a little too much, of course, adrenals can also cause problems. This is an excerpt and am sorry if it will cause you more anxiety:-

What are the Signs of Overmedication?

They vary, depending on the person, but signs of overmedication with thyroid hormone replacement are often similar to the symptoms of hyperthyroidism, and can include anxiety, difficulty sleeping, elevated pulse, weight loss (or in some cases, weight gain), diarrhea, muscle aches and weakness, hair loss, fatigue, exhaustion, irrtations or sensitivity in eyes or neck area, among others.

I hope you feel better quite soon.

HypoHippo, your name says it all , and I totally relate to how awful you feel. Do get yourself to a good naturopathic physician. Mine has me (at home) do a blood spot test and a 24 hr. saliva test about every three months, these are for a complete thyroid panel and adrenal function as well as hormones , so you can see if yours are out of balance.

My symptoms started in perimenopause ( panic attacks and anxiety), then over the next seven yrs. I've had lots of inner shaky feelings 24/7. I did ,at the onset of those feelings, get treatments from a reputable acupuncturist ( right after the treatment I felt fantastic ), but needed to continue treatments every few weeks; but it helped greatly ! I lost 25 lbs. and looked very emaciated , and also had about all of the 35 to 45 symptoms listed for thyroid/menopause ; and I did feel like I wanted to die ( it's hard not to, when everyday you feel lousy for months on end ). You didn't mention your age are you possibly in perimenopause ( are you a female ?) . I was diagnosed by medical dr's in the past ( before my naturopath ), one said I was hypothyroid and needed to be on levothyroxine for life and depression meds too. I refused the levo. , stating I wanted to address this naturally , and also took one of the awful depression pills that made me feel ten times worse,then they had me " try" another pill that was just as bad ; so they went into the garbage. I went to another dr. who did the proverbial TSH test, she said my thyroid was fine and that I didn't need the meds ( go figure ! ). Presently I have gained back all of my lost weight slowly and now weight more than I did at the start. I have non of the suicidal thoughts, and my outlook on life has greatly improved.Even though I don't like the extra weight I am now carrying on me, I am not beating myself up about it. I am now five yrs. postmenopausal, and am having other symptoms ( mostly terrible heat intolerance, sinus issues and slight vertigo/spacey feeling).I can't do much activity because I get exhausted easily . I am needing to get the blood/saliva testing done again to see how my body has changed in regard to my hormones ( didn't have the money to do this , as you surely know this all gets very expensive).

Unless you have the tests for your adrenals and hormones done you won't truly know the total of just what is going on in your body. DO NOT increase the meds yourself ! Do yourself a much needed favor , find a top notch naturopathic doctor who knows what they are talking about. You are not crazy ! You are totally exhausted from an imbalance in your body ,as well as all the worry and stress that feeling this way causes you. You will get better. Also , you will want to change your diet , your naturopath will instruct you.

Hang in there my dear , get the good help and pray daily !

Just make sure you get FREE T3, FREE T4 and REVERSE T3. These are really important. And you can not just jump into 4 grains, you will get reverse T3 problems for sure. You need to raise up slowly.

Go to website. I ordered the book because it is chock-full of excellent information. It sounds as if you are not absorbing the medication, which can be caused by a whole host of problems - low vitamin D, low ferritin, estrogen dominance, adrenal disfunction...the list goes on and on. Also, while not common, some people need as much as 5-6 grain per day to have enough NDT. You really should not be self-medicating though. What NDT are you taking?

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