Urgent help before Dr appt.. Tsh normal but all symptoms still chronic...

[Caliendria]

Hi.. Firstly I have Sjorgens Syndrome, am RO positive suspecting lupus at slow progression, currently neg Ana and have a huge number of other conditions that can often been seen with auto immune disease but found out a year ago I had hashimotos after 9 early mc, weight gain, chronic fatigue, palpitations etc tsh was 13.9,currently on 112.5mcg of levothyroxine ... In September tsh was 0.35..but I am still sleeping 10-12 hours a day, still get exhausted at the slightest activity, still having palpitations at times and heart rate occasionally goes up to over 101 when resting even though it is usually only 68..I haven't gained more weight but have not lost an ounce even though I eat very little on an average day. I am never hungry during the day so I have a slim fast milkshake with skimmed milk for lunch and a high protein, low fat dinner plenty of veg, scarce carbs. Snacks if any of seeds/fruit..also I dud ovulate day 12-13,but last cycle not til day 22 and a week later 9dsys of old blood bleeding. This cycle now on day 16 no ovulation but spotting - this may be due to hormone in balance but very strong possibility it is due to my endometriosis and adenomyosis .. went back to Dr's and asked for bloods again... Tsh is 0.98...they don't seem to have ever tested my t3 and t4 despite me asking everytime... I am expecting a phone call this afternoon.. I need to know what to ask for that they will do on nhs... If this is not due to my thyroid/pituitary then I can only think chronic fatigue syndrome.. But as I have no evidence t3/t4 is good I am concerned that the answer lies within that.... Is it possible to be hypo, normal tsh with levothyroxine but t3 or t4 abnormal causing all same symptoms and what treatment is there on NHS. Tia

[anonymous45]

Your fT4 should definitely be measured, and ideally fT3 also. The latter is almost never done on the NHS, and hence a private blood test is recommended to get a fuller picture of Thyroid function.

With a the several autoimmune diseases you have, you should get Thyroid and Adrenal (cortisol mainly) function tests done at least once every year.

Your TSH is adequately low, which with normal brain (pituitary and hypothalamus) function suggests good thyroid function. T4 should still be tested if it has never been done, since if this is low in range; could still suggest thyroid gland dysfunction.

[Caliendria in reply to anonymous45]

I am on levothyroxine which has bought tsh down from 13.9 to 0.35&0.98 so he thyroid gland is not functioning well..

[anonymous45 in reply to Caliendria]

Given the reduction of your TSH to a normal level, I would confirm that fT4 and fT3 are in the normal range also, to check whether your Levothyroxine dose is sufficient.

I still think it's worth checking pituitary hormones (FSH, LH, Prolactin, GH, Oestradiol, Testosterone etc.), as imbalance of these can mess with energy and menstruation amongst many others. Even though it's likely to be other causes, it's a safe bet with such a wide range of ongoing symptoms. Prolactin can be elevated in many autoimmune diseases, so this is even more crucial to check alongside the others.

8am Cortisol (Serum) should be checked to rule out adrenal insufficiency, particularly as your Thyroid gland function is poor, and likely has an autoimmune component.

[greygoose]

Yes, it's perfectly possible. The TSH is not a good indicator of thyroid status. Both your FT4 and FT3 could still be low, despite the low TSH. Or your FT4 could be high and your FT3 low because you do not convert very well. But, you need to have them both tested to find out. The NHS is very bad on thyroid testing, because doctors are extremely ignorant about all things thyroid. So, we need to take charge of our own health. And, if you cannot persuade your doctors to test FT4 and FT3, then you really need to get them done privately.

But, I'm somewhat concerned about your diet. Low-fat is not a good idea. The body needs fat to be healthy, and if it doesn't get enough all sorts of problems can arise. Eating fat does not make you fat, and weight gain when hypo has little to do with what you do and do not eat, it's to do with low metabolism and - to a large extent - water-retention. Also, low carb can be bad for you, as well. You need carbs to be able to convert T4 to T3. So, if you are cutting too many carbs you could very likely have low T3, which is causing all your problems. Low-calorie is also a bad idea. You need calories to convert, and as conversion is harder for hypos, we often need more calories, not less.

A pituitary problem would show up with low TSH and low FT4/3. However, as you say they have never tested your FT4/3, you must have been diagnosed with a high TSH. Which rather rules out a pituitary problem - although, of course, a pituitary problem can appear at any time, but you would need some reason to suspect it. Have you recently had a blow to the head, excessive bleeding or any other reason to suspect the pituitary is not working correctly? How much levo are you taking? I don't think you've said. But, if you're on a substantial dose, that would be the reason for your low TSH, not a pituitary problem. But, don't think Chronic Fatigue, ever, because that is a dead-end 'diagnosis'. Get that on your records and you will be stuck with your symptoms forever, and no attempt will ever be made to discover the cause of them.

It's actually highly unlikely that you are going to get anything out of the NHS, unless you have an exceptional doctor, willing to fight for you. As far as treatment goes, the NHS only really offers levo. It gets harder and harder to get T3 prescribed, and NDT is almost unheard of. So, you are going to be very much on your own, with this. Talk to your doctor, by all means, and assess his attitude. But you're probably going to have to get private testing, in the end, I'm afraid. Details here:

thyroiduk.org/tuk/testing/p...

[Caliendria in reply to greygoose]

Thanks for that... I have been super let down by NHS for over a decade with my conditions.. I only got diagnosed with the hypo because I demanded further testing as I knew something else was wrong.. It is a direct result of this being undiagnosed that I have had the miscarriages and we extended the time we would try until tsh stable but I now fear that due to unmedicated for the t3, we now have to kiss goodbye to ever having our own child...so adoption is our next step but categorically out of the question until I can get my symptoms under control...i will try to get Dr to test t3&t4 and if she won't medicate if it shows a need then I will see if she will write private script... I am not at all worried about my diet other than trying to cut out anything processed to help gut, but that's quite a long process.

[greygoose in reply to Caliendria]

You're welcome.

But, you really should get your vit D, vit B12, folate and ferritin tested. With a low fat diet, it becomes difficult to absorb certain vitamins like vit D and vit K2 from food.

[Caliendria in reply to greygoose]

Had all these tested regularly and are always spot on where they need to be. As I say diet is something I am not worried about, I am well educated with diet, exercise, nutritional needs etc..the only reason I tend to miss a meal at the moment and use the milkshake as a substitute is because I am sleeping so late in the day and do not have the energy to prepare fresh meals more than once a day.... At least with the milkshake and nut, seed and fruit snacks I am getting the nutrients I need and when I say low carbs, carbs are pretty useless to stock up on if you are not exercising and I still eat potatoes and a little rice but rarely pasta and no bread and pastry on regular basis as they have no benefit and are not good for my gut.. I just wanted to know what I need to be demanding test wise to rule out or to confirm issues with t3 and what treatment is available and how to get it... It is really good to know not to mention chronic fatigue syndrome.... Too often they already write some symptoms off as 'that's part of the Sjorgens or the fibro myalgia' etc... I have a constant fight with my rhuematologist over tests...

[greygoose in reply to Caliendria]

It's not missing a meal that concerns me - I only eat two meals a day. But, the lack of fat and carbs. As I said, you need carbs for conversion of T4 to T3, never mind exercise. I'm talking about making the most of your thyroid hormone replacement. And, I've never met a dietician/nutritionist that knew anything about that.

To get the full picture of your thyroid status, you need:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin.

And it's very unlikely you'll get all that on the NHS.

Regarding treatment, they will tell you you only need T4 (levo), but that's not always true. But, they don't know enough about thyroid or understand it well enough to realise that. If you don't convert well, you may need T3 - either synthetic or in NDT (Armour etc.) but it is getting harder and harder to get them prescribed - or even find a doctor that knows what they are and/or isn't hostile towards them. A lot of people end up buying their own.

[Caliendria in reply to greygoose]

Hi, sorry to bother you... Can you shed any light on whether t3&t4 are OK... Does this mean my symptoms are likely nothing to do with thyroid?... Tsh... 0.1 (0.3-5.5), free t3.. 5.2 (3.1-6.8), free t4... 24..(10-22)...

[greygoose in reply to Caliendria]

I've replied on your other post.