Can anyone help me with a list of the different thyroid problems along with a brief outline of what results they yield. I ask because I'm confused about the different names given. I only ever knew of hyper/hypo thyroid but there seems more. Also if you could write if it means low T4 or whatever.
My issue was that my results are like hyper thyroid, i.e. low TSH, but other stuff is normal. But I have symptoms of hypothyroid. Once I had a lot of tests done antibodies etc.. and tried to figure it out, but I end up confused.
Normal just means in range - it is where you are in the range that is the key to wellness. Most people feel well when the FT4 & FT3 are towards the top of the range.
Some people produce good levels of FT4 from the thyroid but have poor conversion into the ACTIVE thyroid hormone T3. The latter is very rarely tested in the NHS and so people remain unwell and undiagnosed. T3 is needed in every cell of the body - heart cells - brain cells - gut cells and so on.
If you have some results with ranges then do post them and members will be more than happy to comment ...
Good conversion is linked to optimal levels of B12 - Folate - Ferritin - VitD. Bumping along the bottom of the range does not help - results need to be optimal. Never accept normal/fine/ok ... 😥
Hypothyroidism: high TSH, below range/low in-range FT4/FT3
Hyperthyroidism: suppressed TSH, very high FT4/FT3
Central hypo: TSH low/low in-range, FT4/FT3 below range or low in range.
Hashimoto's Thyroiditis: levels can be anywhere with this, and tend to jump around. The key is that you have high antibodies - although not always. Levels can go from hypo to 'hyper' - although not true hyper in that the thyroid is producing too much hormone, it's just that the thyroid is under attack and the dying cells dump their store of hormone into the blood. It is the most confusing of all the thyroid conditions.
First step is to get FULL Thyroid and vitamin testing
Highly likely to have low vitamin levels if FT3 is low
Also need Thyroid antibodies tested
Are you on Levothyroxine?
How much and do you always get same brand of Levothyroxine?
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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose 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)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
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
If you can get GP to test vitamin levels and BOTH thyroid antibodies Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
I had all the medicheck tests. I haven’t got hashimotos. My last test the gp only did TSH and that is all they’re testing from now on 🙈.. I’ll be honest I’ve been messing with my levels. I went down to 50mcg of Levothyroxine and now taking 25mcg of t3. I’ll just check my last TSH from gp. I feel full of fluid and quite bloated. I’ve not even told gp I’m takingt3 because they are useless, and worried what she’d say! Xx
Well you need to be EXTREMELY methodical when adding T3
Vitamins MUST be optimal first and Levo dose high enough for FT4 should be at steady level near top of range, for at least 3 months minimum
getting vitamins optimal and on steady unchanging dose (and unchanging brand) of Levothyroxine, for 3 months ......
If after this FT3 still remains low
Then usually at this point FT4 is right at top of range, then Levothyroxine is usually reduced slightly by 25mcg and T3 is added at 5mcg once a day, or possibly adding a 2nd 5mcg dose T3 8-12 hours later
Hold at this dose for 6-8 weeks ......or ideally 8-10 weeks and retest full Thyroid and vitamin levels
The common mistake is to increase T3 too fast.
If you have increased T3 to fast and/or reduced Levothyroxine too far you will get in a pickle
It's always worth trying strictly gluten free diet. Many find it helps or is essential....especially before adding any T3
Strongly recommend you stay at current dose for minimum 6-8 weeks and retest thyroid and vitamins
Are you splitting your T3 dose?
10mcg 7am
10mcg 3pm
5mcg 10pm
If you need to reduce T3 it must be done very slowly...5mcg maximum and wait few weeks
Almost any dose of T3 will completely suppress TSH......this ineffect completely turns off your own thyroid production (and almost always freaks medics out)
Great thanks for that. I was going to use medicheck which is £59. I’ did start at a quarter tablet once a day. Then a quarter twice a day. I do half twice a day now. I’ve only got 25mcg tablets. I was on 75mcg t4 but my chemist only had teva of the 25mcg and couldn’t get no more anywhere they said x
I’ve never had a thyroid scan. But I do take a good vitamin D. Do u think I should keep my dose like this or go back to half a t3 a day. I just think it’s awful the way doctors just leave u to it 🤷🏽♀️ it’s a good job I’ve got this website xxx
Thanks for the great information, it really helps. My Rheumatologist (yes I have Fibro) ran some blood tests for Thyroid last week. I don't have results yet but will post when I do. Mostly, they're just TSH, which I was read was brought in because its cheap but otherwise incomplete.
In the past I noticed a trend, the TSH was either below the range or borderline. Yet they ignored it and I couldn't get my head around the other stuff.. So I had to accept the findings.
I do have a goitre, which periodically flares up. I had it scanned and they found small nodules. Alas no explanation given or action taken. When it flares, my neck becomes swollen and I feel ill, a general malaise e.g Fibro.
What are your symptoms ? If your TSH is low or below range I am wondering if you have had the FT4 & FT3 tested along with anti-bodies TPO and Tg. NHS will only test TPO and often ignore results - yes it happens - sigh !
If you test positive for anti-bodies then you have Hashimotos - an auto-immune condition - often starting with gut issues. ( I had gut TB - Crohns - Hashimotos )
There is also a condition called Central Hypothyroidism where the problem lies with the Pituitary Gland resulting in low TSH - FT4 & FT3. TSH - Thyroid Stimulating Hormone - is a Pituitary Hormone which increases when it senses thyroid hormones in the blood are low. The T4 the Thyroid produces is a storage hormone and mostly inactive. It must convert into ACTIVE T3 - needed in every one of the trillions of cells in the body. So when levels are low there simply is not enough to go around ! A bit like driving from Bristol to London on a gallon of petrol . .. 🤔
Also as T3 is rarely tested other conditions are diagnosed and various drugs prescribed - blood pressure tablets - PPI's - Statins - anti-depressants - when often a good dose of thyroid hormones would resolve symptoms.
Also if B12 - Folate - Ferritin - VitD are low in range it can indicate a thyroid issue due to poor absorption.
Sadly Docs only have around half an hour on the Thyroid at Med School and most GP's have very little knowledge as you will read about here on a daily basis ..
Hi Fibrofoggy, I clicked in from your comment to someone else's post, hoping to comment on your blood tests. In this thread you mention that you got some thyroid results. Did you end up posting them anywhere?
Based on the symptoms you mention, throat swelling and a diagnosis of Fibro I'd definitely look into thyroid and confirm whether there is anything going on.
TSH is not enough to tell us anything in detail. Only if it's completely out of the normal range. You really need to see a complete thyroid panel which consists of TSH, freeT4, freeT3. Ideally Hashimoto antibodies too. And even better to have vitsmins, Vit D, Vit B12, Folate and Ferritin, as being hypothyroid trashes vitamin levels.
I'm happy to interpret any thyroid blood tests you have. But if you can't get your doctor to do the above, I recommend getting a finger prick mailorder test from Medichecks or Bluehorizon. If money is tight get the thyroid panel only, if you can afford it get everything I listed. They both do packages that include it all.
Thank you for taking the time to provide such helpful guidance. I really appreciate it.
A while back a locum GP conducted the full spectrum of thyroid tests, including antibodies. I believe she only missed one. I have not posted those results as I've yet to locate them. I will if and when found.
Just recently my Rheum did the standard TSH and T4 I think. They were normal. He also did B12 etc.. None were high, however the results are skewed as I supplement with Iron, B12, D3 and now folate. I was also on Biotin at the time which is known to affect results. As a vegetarian both B12 and Iron tend to be low, so hard to know if its thyroid related.
What I persistently have is high ESR, CRP, and WBC's with low MCHC(?) the iron count within the cell. The Rheum said its ''normal'' for me because I had similar results a couple of years back.
In the past I had TSH lower than the range whilst another measure T4 or something was high but within range. The doctors ignored it, stating I tended more towards hyperthyroid.
One doctor put me on Levothyroxine and my TSH dropped further. He said it was very dangerous for me so I must stop. He only gave it because of my hypo symptoms. I did feel better on it.
The main puzzle for me is the neck swelling and I feel I 'look' like a hypo thyroid person. I was previously very slim so the weight gain and lethargy is hard to cope with.
Whenever a doctor tells you something is 'normal', this is just an opinion and often not very useful. Because you can be very sick while having numbers that are normal. What matters is exactly what the numbers are.
For iron and B12 you want these numbers to be optimal in order to keep you healthy. If doctors think your numbers are borderline or low-ish it likely means they are horribly low. You may need to use higher quality supplements, or you may need to introduce a small amount of meat to your diet.
I also have a high CRP and high white blood cells since I've been ill. These are a bit uncommon when hypo, it's more common to have low white blood cells. Unfortunately I'm not familiar with MCHC, it's not done in my region and I believe that test is a done only in some parts of the country.
Do you have the actual numbers for any of these tests? I can interpret the thyroid results for you, but for vitsmins you may need to make a new post as some people on the forum are very very knowledgeable about them.
A TSH low in range is quite a strange result. It might indicate that you have central hypothyroid. This is a condition where the thyroid itself is working fine, but the messages it gets from the body are not working properly, which means the thyroid doesn't do it's job. Doctors can be really awful at diagnosing this, and the current guidelines don't include any diagnosis comments at all.
A swollen or moon face can indicate being hypo, and swelling in the neck very much suggests it. I think you definitely need to see a proper set of thyroid results.
Too often we have people on the forum who have been left sick for years or even decades while their records show the blood tests were being taken but just ignored.
I've been sick for decades, a total contrast to how I was before.
Not one doctor, apart from a private dermatologist, told me to take B12 etc.
Central hypothyroid seems to ring true, intuitively. Do you know what the markers for it are? My results baffled the doctors, hence dismissing them as 'normal' for me.
Fibrofoggy, the main marker if central hypothyroid is having a low TSH, while freeT4 and/or freeT3 are also low. They don't have to be below range, they may just be low in range.
A healthy person will have a TSH between about 0.8 and 2, and the freeT4 and freeT3 close to the centre of the range. The further out from the centre they are, the more likely that there is a problem.
Doctors often don't spot central hypothyroid, because they consider high TSH to be the marker for thyroid illness. With central, your body isn't able to produce high TSH.
Because this is a problem with the pituitary or the hypothalamus, which have a lot of other jobs, too, there will often be problems with other kinds of hormones, for example sex hormones or pregnancy hormones. Something like 40% of sufferers have very high prolactin.
I have had a thyroidectomy for thyroid cancer. My body isn't managing very well without a thyroid.
I also have PCOS, so yes hormonal problems. I suspected pitutory problems as a child and didn't grow very tall. And I had a lot of xrays (radiation) as a child.
Really need to dig out those results, tomorrow hopefully.
Are you still suffering with fatigue? Did the CBT help? What else have you tried?
Wow, that does add up a lot. It's really hard to get a diagnosis of central hypothyroid, and very often people have to self medicate.
Yes, I'm still pretty disabled. I've found out I have thyroid hormone resistance, which means needing a very high dose. I've been adjusting upwards for 3.5 years.
The symptoms of Central hypothyroid and Hashimoto's will be basically the same. They both result in the same thing, being hypothyroid or low on thyroid hormone. Thyroid hormone is needed by every cell and organ in the body, so almost any kind of symptom can be caused.
With Hashimoto's, some people also experience symptoms from antibodies, and are vulnerable to other auto immune conditions. With Central, there are likely to be problems with other systems controlled by the pituitary or hypothalamus (central hypo has two forms, secondary when the pituitary isn't working properly, and tertiary when the hypothalamus isn't telling the pituitary what to do properly).
The ThyroidUK webpage has a long list of symptoms that can be caused by being hypothyroid, and there are many more. thyroiduk.org.uk/tuk/about_...
In my experience the most characteristic are fatigue, feeling cold and low temperature, slow digestion and constipation, dry skin, weight gain, slow pulse and other heart problems, anxiety/depression particualry feelings of being overwhelmed and low self esteem. There is also an ankle reflex test that is the most specific test, which you can do with a friend to help you. Most people dont have every single one of these.
I don't know about the low self esteem... I spot it a lot in myself and my two hypothyroid friends. I think it might be partly because it's easier for people to just call themselves lazy and think they can't do what others can do than to say that they are sick!
I don't know too much about vitamins. SeasideSusie is the best person to look up for vitamin information.
Happy New Year! I hope you get to the bottom of your thyroid symptoms in 2020. x
Or for other people to think we're lazy etc.. and we absorb those 'opinions'.
I had a look at the web link, 90% of the symptoms apply to me. And all the mental/emotional ones. Low self esteem is a biggie, with reason.
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