Please help! Thyroid/hormone balance

[Kitty1watson]

I've had health problems since summer 2011, after I got an infection on holiday in Greece. At the time, I was healthy and weighed 8st10lb. Within a month I had gained a stone and within another month I had gained another stone. Nothing in my life changed and over the years I have tried to lose the weight and failed. This has never been a problem for me and the suddenness makes me think something is wrong. Most doctors have told me I'm eating too much, or that I'm not eating enough.

Diagnosed with an autoimmune condition around 2013, affecting connective tissue (I get very painful ribs and joints, scratchy eyes and dry mouth). Medication did very little but cutting out nightshade foods has helped.

I was then put on levothyroxine after TSH test of 5.2. I lost 7lb within 2 weeks but after that it crept back on again in the following two weeks. They increased the dose to 100mcg and exactly the same thing happened. Lost 7lb straight away only to put it back on.

Just had the following test results ordered by a consultant (not currently taking levo):

TSH 2.29 (range 0.27-4.2)

FREE T4 12.2 (12.0-22.0)

Cortisol 567 (170-700)

Prolactin 302 (102-496)

FSH 6.8

LH 10.4

These last two have a whole list of reference ranges relating to where you are in your menstrual cycle I believe (and my results fall inside or very outside, depending on where I was). **No one asked me that question at the time of the blood tests**.

I have been told everything is fine, see you for a check up in March to see if anything has changed. Nothing has been done, so nothing will change. It hasn't changed for 5.5 years. I am feeling very low that I will never be myself again. Can anyone help me??

Is there someone I can go to who might actually treat my symptoms and try to help me instead of just saying "your TSH is fine, go away"??

I lost a little weight recently (7lb again!!) by eating virtually nothing for a month (about 600 calories a day) but as soon as I ate normally (my normal is very small meals anyway, about 1200 cals a day) it all went back on. This cannot be right.

Thank you.

KW.

[greygoose]

Why aren't you taking levo at the moment? Are you taking something else? Have you had your antibodies tested? I don't think you give enough information for anybody to be able to help you, I'm afraid.

[Kitty1watson in reply to greygoose]

I was told that it would be better to start with the consultant with a clean slate so I stopped taking everything. He also said he thought it might not be my thyroid after all which is why he ordered the other tests. I'm in limbo a little now, as they don't want to see me again until March. Also, I was concerned because of the fact that after the initial and quite quick weight loss on levo it went back on and added a bit. I was scared to make it worse.

I asked him to test T3 but he said they don't do that. He said I was anaemic during pregnancy (baby born December 2015) but no one told me that at the time; that was the first I'd heard about it (Oct 16). When I was pregnant, I was the only person I knew who lost weight. I lost about a stone of my own weight (I basically weighed the same at 9 months pregnant as I did at 0 months! All my autoimmune symptoms were suppressed in pregnancy, which I understand is normal because the body suppresses the immune system so as not to reject the baby). I put it back on within a few weeks.

I was told some time ago my antibodies were normal.

What other information would you like?

Thank you.

[greygoose in reply to Kitty1watson]

Never accept the word 'normal' in response to a thyroid blood test. It is an opinion, not a scientific fact. Do you not have the results for the antibody testing? In any case, one negative test does not mean you don't have Hashi's, because antibodies fluctuate.

So, how long since you took your last dose of levo? It takes a while for it all to leave the body. Quite honestly, I cannot see the point of stopping the levo before seeing the endo. As I see it, it only muddies the water.

What time of day was the above test done? TSH is highest early in the morning, and drops throughout the day. So, it would be higher at 8.0 am than at 2.30 pm, for example. It also drops after eating. So, the conditions under which tests are done, are very important, they can change a lot of variables.

Your FT4 is very low - and I must say, I would expect a higher TSH with such a low FT4. And, that's where the FT3 comes in (although they don't seem to know it). If you are a super converter, your FT3 could be more acceptable than your FT4. But, if you're a bad converter, your FT3 will be below range, and that would be very bad. And you will only know how well you convert by having the FT4 and FT3 done at the same time.

Your TSH was 5.2 when you were diagnosed. Do you have the FT4 reading for that time?

I don't think the losing of 7lb and then regaining it is relevant. It is perfectly normal for symptoms to improve when you first start on a dose, and then return a little later. And, weight-gain is a hypo symptom. All it means is, that you need an increase in dose. 100 mcg isn't a very high dose, so you probably needed more than that. Do you have your lab results for when you were on 100 mcg?

[Kitty1watson]

I can try and get them. They get really funny if you ask questions and it was a massive battle to get them to increase me to 100mcg in the first place because they said my TSH had fallen to a suppressed level when on the levo, so they didn't really want to do that, despite my symptoms not changing (still very dry skin, overweight, constipation).

I had the latest tests at 9am and on an empty stomach. The same was true for when I got the result TSH 5.2. Prior to that it was 3.99 and they sent me away as it was under 4.2 (and so "normal"), but I had read that it is higher in the morning so I asked for the re-test and that's when I got 5.2 amd they agreed to trial T4.

I have decided to start the levothyroxine and supplements I was talking again, regardless of whether the consultant will see me but I do feel very frustrated about the tests. One gp actually requested for me to have T3 done and the LAB refused to do it! Twice! I think they may have done it in the end but I do not have the results. I will ask.

I'll try and get hold of all the other results asap.

Thank you for taking the time to come back to me.

[Kitty1watson]

Hello again. Wow, a very helpful receptionist!

March 2016:

TSH 5.2

T4 12.9

Diagnosed borderline hypo so given 50mcg T4.

May 2016:

TSH 1.72

T4 14.5

Symptoms still poor so increased to 100mcg

June 2016:

TSH 0.043

T4 18.7

T3 6.6

This was the point at which they started to say they weren't happy that it was my thyroid and referred me to a consultant, who has now said "all is well" and to come back in March.

Now TSH 2.29

T4 12.2

No T3 tested.

Kind regards.

[Clutter]

Kitty1watson,

Your results in June were very good, TSH was low, FT4 was high in range, and FT3 was probably close to top of range but symptoms can lag behind good biochemistry by several months. Were your results TSH 2.29 and FT4 12.2 while you were taking 100mcg or after you stopped taking Levothyroxine?

[Kitty1watson]

After I had stopped. The gp told me they thought my results in June showed I was over medicated and that it might not be my thyroid at all causing the problems. The consultant wanted to get a picture of my results having not taken the drugs so he could effectively start again. Everything takes so long that I hadn't been taking thyroxine for about 2 months by the time I saw the consultant.