18 years hypothyroid, STILL don't know what's actually going on! Please help explain my lab results

[SarajSmith]

Hi everyone, I have been hypothyroid for 18 years & for the last 3 years, I've had many symptoms of hypo but my GP says my tests come back fine! She's mentioned fibromyalgia & pain clinics, but I'm at my wits end, I don't feel like I understand this disease enough & am struggling to take on information due to everything that's going on! It's an ongoing merry go round & I can't get off! Please have a look at my last lot of lab tests done in December& tell me what you think? Many thanks! 🙂

[Scouser58]

Hello SarajSmith,,,,,,I agree the report of results does look confusing and a head scratcher,,,,,,,,I had a look through,,,,,1st columns tested serum's 2nd col your test figures,,,,,3rd is the unit sizes used,,,,,,4th is the 'ball park' averages,,,,which are only used for general information,,,,,,they are not fixed for everybody,,,

,the last two Serum free T4 and Serum TSH level,,,,,,,, these need to read by an endocrinologist,,,,,,who has better understanding of these,,,,,,,,,,You are having hypo side effects,,,,,,and this is with taking the medication,,,,,if the dose is too low then you need to have it adjusted,,,,too high in one could need an adjustment,,,,,and the other too high/low could mean they need to be better balanced,,,

When my readings were read by the specialist he adjusted my meds down from 2mg to 1.75mg and although I still get cold and sleepy at ti,es my overall balanced seems to be ok,,,,,as your gp for a referal to a specialist.  The results suggest you are in the middle with your readings,,,but these are only averages and your readings need to be read for your control.   Sadly there is nothing but to keep taking the meds,,,,I did know somebody who was the hyper,,,and she did run around and generally wear everybody else out just watching her,,,,and an operation was the required 'cure' for her,,,,,she was better after the op,,,so being hypo is not as bad,,,,just something we have to put up with,,,,,,I hope this will help a little,,,,ttfn from Karen.

[SarajSmith in reply to Scouser58]

Hi Scouser, my GP will not refer me or do anything regarding my meds because my results are "normal"!  I told her about my symptoms & how they echo hypo but she is convinced it's fibro and wants to refer me to a pain clinic! I just thought it was worth getting to the bottom of hypo first as that seems to be the logical choice! I probably need to pay privately or wait for the pain clinic referral to see what they say, as that is where I will get a diagnosis! It's just that I've had these symptoms for 3 years and want to do something! Thanks so much for reading through my post & giving me more information than I've ever had from my gp surgeryx

[loueldhen]

Are you on any meds at the moment?

[SarajSmith in reply to loueldhen]

Hi loueldhen

Currently I take 100mcg thyroxine daily, 1500mg Gabapentin & 60mg amitriptylene daily.

[loueldhen in reply to SarajSmith]

After years on levo I was grinding to a painful halt. Had all sorts of investigations. Last stop was an arthritis diagnosis. I stopped taking levo. Felt better within two days. The muscle pain was being caused by the levo. Some people just can't take it. Never crossed the GP's mind that it could be the cause.

[SarajSmith in reply to loueldhen]

You sound the same as I do, all sorts of investigations! Latest one for MS, I had so many symptoms, but the specialist said he didn't think it was, yet!!! What does that mean? Back to the neurologist, back to the GP, I don't understand why they won't investigate! It seems the most logical explanation especially when I read that fibro can com from hypothyroidism! As it's the disease I have, why not look into it further? Did u get ur RA diagnosis from ur GP? After a blood test? 

[loueldhen in reply to SarajSmith]

No i was referred to an ra consultant but cured myself before the appointment came through. If you look at my earlier posts you'll see the history. I would recommend not taking t4 for a couple of days. I felt immediate relief as though i was no longer poisoning myself. It's a shame it took me years to work it out. I didn't have any diseases I just reacted badly to the levo but it took years of deterioration to notice. My muscle strength has not returned but at least I'm not in agony all the time. Now I'm on T3.

[faith63 in reply to SarajSmith]

i have just told my doctors that if my thyroid meds worked, why can't i lose weight and why am i in pain.  I was told that low hormones do not cause pain.  I have refused gabapentin and antidepressants!  Please do your research, don't allow this.  See Kelly Brogan MD, isabella wentz, dr mark hyman..great websites to help you learn to look out for your own best interests and recoup your health.  I am doing this now.

[greygoose]

Hi Sarah, well, your labs are fine... as far as they go! But, there are too many things left untested.

Doctors know nothing about thyroid symptoms, absolutely nothing! There are over 300 recorded symptoms but I doubt your doctor could quote two of them. And, they only go by the TSH - that's what they learn in med school. And they Don't have the interest to investigate it further. it's far easier for them to 'diagnose' fibro - although there's no blood test for that! - because all they have to do is prescribe pain killers. It doesn't tax their brain too much!

Fibro is what I call a 'dustbin diagnosis' - there's not even any proof that such a disease exists. In fact, it's actually a syndrome, not a disease. A syndrome is a bunch of symptoms. Symptoms have to be caused by something. It could be low thyroid, nutritional deficiencies, low/high cortisol, or a number of things. But, they can't be bothered to get to the bottom of your symptoms, so they just dump them in the 'diagnosis' of fibro. You see what I mean? I am not doubting your symptoms by doubting the existance of fibro, what I am saying is that you need to find out what is causing them.

So, the tests you really need are :

TSH

FT4

FT3

TPOab

TgAB

vit d

vit B12

folate

ferritin

These are the very minimum number of test that need to be done to get a comprehensive picture. Once you've dealt with them, you could go on to get a 24 hours saliva cortisol test, zinc and selenium and, I've been reading today, those diagnosed with fibro often have low potassium. Have you had your potassium tested?

But, your doctor thinks that all she needs to do is test the TSH and the FT4 and, if these are both 'in range', her job is done. The truth of the matter is, she knows nothing about thyroid!

You aren't on a very high dose, are you. And your FT4 says there's plenty of room for an increase. But, if your doctor is just looking at your TSH, she will think your dose is OK.

Very few doctors know anything about thyroid. Which is why we have to read and learn so that we can take charge of our own health? So, let's start with the blood tests above... (I warn you, this is going to turn into a book! lol)

TSH : this is a pituitary hormone, not a thyroid hormone. Thyroid Stimulating Hormone. The pituitary secretes it when it senses that there is a need for more hormone. It stimulates the thyroid gland which, in a healthy person, produces more hormone. When on thyroid hormone replacement, Levo, it is a rough guide to how much thyroxine you need to take - but, a very rough guide! Because it is not very reliable. To catch it at its highest - which is what most of us need to do - we should have a fasting test (just drink water) as early in the morning as possible. And we should leave a 24 hour gap between our last dose of Levo and the test. Is this what you've been doing? Your doctor won't have told you that, because she doesn't know!

FT4 : measures Free T4, a thyroid hormone. It's basically a storage hormone that needs to be converted into the active hormone, T3. Doctors believe that everyone is a perfect converter, but this is not true. A lot of us have problems converting for various reasons. And the only way to find out is to measure the FT4 and FT3 at the same time, and compare them. But, as FT3 is rarely tested on the NHS, doctors have no idea how many of us have problems converting, and therefore think it's rare! So very short-sighted of them!

FT3 : measures the Free T3. It needs to be free for the body to be able to use it. There is another test callled the TT3 (Total T3), but that measures both bound and free T3. You do not want that test as it gives little useful information.

TPOab and TgAB : antibody tests. If either - or both - of these are positive, you have Hashimoto's disease, an autoimmune disease where the body's immune system mistakenly thinks that the thyroid gland is the enemy, and slowly destroys it (basically). In other words, there is nothing wrong with your gland - except that it is getting smaller and smaller - it is a problem with your immune system.

When you are hypo, you often have low stomach acid, so you will have difficulty absorbing nutrients. The following nutrients need to be 'optimal' for your body to be able to use thyroid hormone.

Vit D : needs to be at least mid-range.

vit B12 : needs to be over 500 (never mind the range). Anything Under 500 can cause irrepairable neurological damage. Optimal is 1000

Folate : vit B12 and folate work together, but always supplement methylfolate rather than folic acid.

Ferritin : is the protein that stores iron. This is a difficult one, because if you have inflammation, and hypos often do, the ferritin will appear to be over-range. But, that doesn't mean you have enough. Other markers for inflammation should be tested at the same time. But, in the absence of inflammation, most people find they need it to be around the 100 mark.

Unfortunatley, doctors know as little about nutrients as they do about hormones! So, they think that anything 'in range' is 'perfect'. You will get little help from your doctor on any of this!

But, we are here! And, if you have any questions, there's a 99.9% chance that someone here will be able to answer it - unless it's just something that your doctor has made up on the spur of the moment. That seems to happen a lot! lol          

  

[laurielash]

You seem to need a doctor who will test T3 and reverse T3 at same time TSH and T4 are done.  Google Reverse T3 to learn.  Many of us do not convert T4 to its active T3 component, but instead to too much reverse T3 which blocks the site for the valuable T3 (simplified),  Good luck...