T3 increase and head pressure : Hi all, i’m... - Thyroid UK

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T3 increase and head pressure

Rosebud1955 profile image
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Hi all, i’m confused as to what to do. I increased my cytomel from 7.5 to 10mcg. I take 100mcg synthroid +7.5 cytomel every morning @ 6am. I have been loosing my hair, gained an extra 4 pounds in a week, very dry skin, headaches and very crippling low energy, feeling like I have been run over by a truck. I had labs and did not feel satisfied with the results, so I increased cytomel by 2.5 mcg three days ago. Now i’m Experiencing head pressure but the fatigue has improved. I’m not sure 8 did the right thing. I’m seeing an endocrinologist who seems sympathetic, but is tsh obsessed. I’m wondering if i’m reacting to the cytomel increase. No signs of being over medicated: heart rate is 60-70, no tremors etc. I’m wondering if I needed to increase to the Synthroid instead. Endo still insist that i’m overmedicated, not able to convince him otherwise. According to my labs, i’m wondering if I have an adrenal or pituitary problem. I read somewhere that cytomel should not be taken with adrenal problem. Can you all weigh in on this for me. Much appreciated!!! Below are my most recent labs.

Tsh: 0.07 (0.37-4.0) Ft4: 12 (9-12) Ft3: 3.0 (2.6-5.8) All vitamins are optimal. Adrenocorticotripic Hormone ( ACTH) 23.9 (<14.0) this ACTH has been repeated three time with high results but no action taken.

Thanks for taking the time to read. I hope my writing makes sense.

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Rosebud1955
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HashiFedUp profile image
HashiFedUp

Maybe try NDT if the synthetics aren’t helping.

Rosebud1955 profile image
Rosebud1955

Thanks for your input. Yes. I live in Canada, have chronic Lyme with co-infections. I read further in it the lab results and noted aldosterone levels to be very high. In the comments in brackets, it noted possible adrenal Tumour with suggestions for MRI/CTscan to make a proper diagnosis. I have been complaining to GP & Endo for more than a year, they just kept repeating blood work with no action. I have pain in my right side radiating to the back, corresponding with the kidney area. G.P at one point mentioned it could be an adrenal tumour but did nothing. Because I have chronic illnesses, they seem to think i’m a hypochondriac and so my complaints are often ignored. It took two years for them to diagnose my papillary cancer. I had to push for for ultrasound and biopsy. I’m totally finished with doctors after this adrenal issue is addressed. They are incompetent, cold blooded, insensitive book worms. They don’t have the ability to think nor to problem solve, they rely on the outdated material that was pushed down their throats in med school. They don’t care about patients, just how much money they can take home each day. They operate their offices like production lines. Sorry to be ranting in this manner but i’m angry at them all. I hope your journey was better than mine. I wish everyone on this forum well deserved health and relief from this terrible illness. I don’t know where I would be without all the lovely people here. I’ thankful that i’m no longer at the mercy of these so called doctors. I’m ready to stand up to them even more now, they’re not smarter than any of us.

Thanks, and have a blessed day.

MrsBeasley profile image
MrsBeasley

ACTH isn’t elevated in adrenal tumours. It’s below range for adrenal tumour. Is your cortisol normal? Do you have recent potassium and calcium blood results too?

Rosebud1955 profile image
Rosebud1955 in reply to MrsBeasley

Thanks for your input. Yes, ACTH is elevated, but Aldosterone is elevated, that’s the one i’m concerned about. Could it be my pituitary? Doctors still don’t have a plan as to what to do next

MrsBeasley profile image
MrsBeasley in reply to Rosebud1955

You could have an adrenal problem but not a tumor on your adrenals or else that ACTH would be well below normal while only the aldosterone would be elevated. That’s why I asked what your cortisol level was because they work together. I have a pituitary tumor and my ACTH is elevated. These tumors are benign though, they’re called adenomas. You can also have a high aldosterone with a vein narrowing in your kidneys so that’s why I asked about your potassium and calcium although I meant potassium and sodium. Usually potassium is low and sodium is high.

Sorry you’re so unhappy with your endocrinologist but I also am in Canada and have a phenomenal one. However, I did have to go for a second opinion because the first one was an idiot. I do suggest shopping around! Read rate MDs and then ask your GP to refer you to one that has good ratings. That’s how I got mine. If you live on Vancouver island let me know, I’ll give you his name.

Rosebud1955 profile image
Rosebud1955 in reply to MrsBeasley

Thanks for your reassurance. I worried myself sick for the entire weekend, just not hearing from the Endo worries me. My potassium is normal, not high although I have eaten a ripe banana every morning with my cereal for several years. Without that, I think my potassium would have been low. My potassium was above range on the last blood work, I thoughtI was having too much salt in my diet, so I have cut back a little. Regarding the kidney, i have been suffering with pain in the right kidney area for over a year, cystoscopy done, showed nothing. I have to go to the bathroom every two hours with urgency, large urine output. I live in Toronto, Ontario. Yes, I shopped around, this is my second Endo. I have been seeing them both without anyone noticing. They just keep repeating the ACTH, it’s high every time, no action taken by any of them. Cortisol: 464(135-537) if you don’t mind me asking, have they treated your pituitary adenoma? At one point my blood pressure rose to 220/110, I normally have very low blood pressure. I was referred to cardiology who ran several tests and found no reason for the sudden blood pressure elevation. He suggested to the Endo that it could be a pituitary/hypothalamus issue, yet the Endo did nothing. I’m so frustrated. I will keep pressuring them for answers.

Thanks again, I hope you’re doing well.

MrsBeasley profile image
MrsBeasley in reply to Rosebud1955

I am on various meds and hormones and I get annual MRIs to make sure it doesn’t press on my optic nerve as it grows. They won’t remove it until it becomes larger because the surgery can be worse than the symptoms of the tumor and you are permanently hypopituitary for life and will require everything replaced. Some places appear to do radiation on it but that’s not offered here. I think normal cortisol with High ACTH is pituitary

Lopears profile image
Lopears

Hi Rosebud1955,

I'm no doctor or scientist, but I have forty-six years of experience with endocrinologists and GPs over thyroid issues, as I have had no thyroid glands at all during that time.

Since the mid-eighties GPs have been instructed to give levothyroxine (T4) to all patients, rather than the previous pork thyroid gland extract that included T4 and T3 in proportion. After levothyroxine was prescribed some GPs and endocrinologists did prescribe cartomel or liothyronine (T3).

However in the last few years the NHS supply contract for T3 has become much more expensive (as the NHS has only one supplier), rising from the normal European price of £2-5 per month to over £260. Therefore the NHS has revised its guidelines for thyroid treatment and now bases treatment on blood testing for Thyroid Supplementing Hormone (TSH). (I may have got the exact nomenclature wrong, but as I say, I'm no doctor.) GPs and endocrinologists have been instructed NOT to prescribe T3 to ANY patient and to withdraw T3 treatment in existence, even where it is clearly working well.

As a result patients who need T3 have had to find out for themselves. In my case I only realised, after years of having my levothyroxine dose reduced, turning me into a cretin time and time again, (cretin = a Victorian name for people who are slow, fat and mentally deficient because of a lack of thyroid hormone). The sudden changes to my metabolism gave me severe heart problems, resulting in a triple heart bypass.

I didn't start to improve until I told my GPs and endocrinologists that I am self-medicating for my thyroid treatment. NowI have to find and buy my own T4 and T3, but my GP still checks my blood levels annually. Hospitals only deal with prescriptions, so I have to tell them I am not using it if I'm in hospital. It does cost money and it is hard to find the prescription and the drugs at a reasonable cost, But for the first time since the mid-eighties I'm in really good health, mentally and physically. And I intend to self-prescribe for the rest of my life as doctors have proved so unreliable.

Rosebud1955 profile image
Rosebud1955 in reply to Lopears

I live in Canada, t3 is prescribed by Endo if needed. I’m presently taking T37.5 mcg along with 100mcg T4.

SilverAvocado profile image
SilverAvocado

Hi, Rosebud1955, looking at your hormone results you've got a very low TSH. You probably already know this stands for Thyroid stimulating hormone and rises when hormone is low. Once we're on thyroid hormone and getting close to the levels we need to get well it will often get very low, and this doesn't tell us very much. But unfortunately doctors are obsessed by it. I think you're a bit unlucky and yours is a completely surpressed even though your hormone levels dont look great :(

For freeT4 shows how much T4 is available in your blood. When we first start out on T4-only/synthroid only treatment, the first goal is to get this number nice and high. This is because these treatments contain only T4 and we want to see them really boosting levels.

T4 is only the storage hormone and needs to be converted to T3 by the body, so this is another reason we want it high in range, to give us a nice big pool to convert from. You've managed to achieve a nice high freeT4, but it hasn't raised your freeT3 levels well at all. This tells us you are a very poor converter, and you'll probably need plenty of T3 in tablet form to get better.

Looking at your freeT3, which tells us how much available T3 you've got, and this number looks dire. T3 is the active hormone needed by every cell and organ in the body to work properly. Most people will need this high in range, the top third or so. Yours is rock bottom.

You need to get this freeT3 high in range to feel well. Your freeT4 is the absolute top of the range, thought, which is quite high. Too much T4 sloshing around can cause its own problems, so I'd suggest reducing T4 a little as you go along. You're getting v little value out of it so you probably won't notice this at all in terms of symptoms. I'd suggest that every time you add in some T3 you reduce by an equivalent amount of T4. T3 is about 4x as potent as T4, so if you add 5mcg of T3, reduce by 20mcg of T4 at the same time.

Looking at the ACTH result, this needs looking into. ACTH works similarly to TSH but for the adrenals, its a chemical signal telling them to make more cortisol. Its a bit more complex to interpret than a high TSH, I believe. This could suggest Cushings OR Addisons disease (over activity or under activity of the adrenals), or a problem with the pituitary. At the very least you need to see a morning cortisol test alongside this, to show if your cortisol is low or high.

It's possible doctors are thinking this isn't out of range enough to be important and that you won't have either Cushings or Addisons, you just have adrenals that are a bit wonky. I'd be suspicious of this because its what we hear about thyroids all the time! I don't know enough to comment on how far out of range this is, and there are quite a few more complex tests you can get to try and stimulate ACTH or see how it behaves. Alongside pushing for more investigation from doctors, in the first instance I'd suggest looking into adrenal fatigue yourself and treating it as this. You will soon see from those results of you have very low or high levels. The starting point is a 24hr saliva cortisol test. There are lots of lifestyle changes you can start right away, rest more, reduce stress, eat healthily and no skipping meals or restricting calories, learn to meditate, cut out vigorous exercise and start gentle exercise like walking, etc, etc.

For vitamins, I would definitely confirm they are optimal. You'll often be told they are fine by doctors. Its quite a bit of work to confirm they're optimal, and there is some help available on the forum.

In terms of adding T3 while adrenals are poorly. Its a tricky question. You need good freeT3 levels, and having low levels forces your adrenals to work harder to pick up the slack. Raising your T3 levels will improve your adrenal situation. Although increasing or starting T3 can also create stress to the adrenals. It's a bit of a catch-22.

What I would suggest is raising T3 super slow to support the adrenals. You've just had a 2.5mcg raise and its caused symptoms (this is common with adrenal problems). If the symptoms aren't too bad you can hang in there and wait it out, but next time cut or grind tablets and in a few weeks raise by 1.25mcg and see how you go. If symptoms are too bad now, drop back, wait for a while, and try the 1.25mcg. If that creates symptoms, too, grind the tablets and use the smallest pinch you can consistently measure.

I would say that even as a person increasing without significant adrenal problems that I have had many weird symptoms in the first few weeks of increasing a dose. It's only if you're feeling that speeded up, heart palpitations, restless and hot, etc, set of symptoms or something else really awful that it is probably adrenals and you will want to drop back. I often feel more overmedicated, undermedicated, more tired, a bit more wired, a few twinges of different things, headachy and sad in the evenings, etc, etc.

Rosebud1955 profile image
Rosebud1955 in reply to SilverAvocado

Thanks for your input. My FT4 is not over range, 12 (9-19) Cortisol: 464 (137-537) ACTH: 19.1 (<14) Aldosterone/Rennin ratio: 63 (<50). All vitamins are optimal. I’m concerned about the aldosterone being high. Lab suggested other testing to be done, Endo has not contacted me, so i’m worried that something is wrong. I was put on Cytomel because I had below range FT3 and above range FT4. You suggested decreasing Synthroid but I think you might have misinterpreted my FT4 as being high. Hope this clarify.

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