Where to go from here, advice please

I am after some advice and your opinion as I really don't know how to feel about this situation I am in now.

I have done previous posts, but, basically here is the story so far.

Around 18 months ago I started to feel very poorly, cold all the time, neck stiffness, depression, hair loss, hearing loss, low contraction, worn out all the time, etc it didn't connect it was Thyroid related until a friend mentioned it to me, as my symptoms didn't come all at once.

I saw my GP in March 2017 and they did a blood test, it came back I was low on Vitamin D, iron and My TSH was 6 (0.27-4.5), and my Serum Thyroid peroxidase antibody 58 (<34.0). I was told to buy some vitamin D over the counter and iron tablets and come back. I felt so low I burst into tears and she said to go back in April for further blood test. April my TSH was 3.7 (0.27-4.5).

However, still not feeling a 100% I requested a private referral to see an Endocrinologist. They tested my vitamin levels and also tested for Epstein Barr Virus. I tested positive for EBV and my vitamin levels were very low. I was prescribed 40,000 IU of vitamin D to take once a week and liquid iron as well as anti virus tablets. For the first 2 weeks I felt on top of the world, but then the original symptoms came back with a bang. I struggled for motivation, shut myself away from people. I would go back to the consultant with no improvement and they would send me away for further bloods (never a full thyroid). I had several blood test, one of them is below;

August 2017 blood results:

TSH 4.7 (0.3-5.5)

Vitamin D 144

Ferritin 39 (13-150)

This is when I came across Thyroid Uk and this forum, and you offered me all fantastic advice.

I had not had a full Thyroid blood test carried out by the Endocrinologist, and from this forums advice, i suggested that I did this along with a scan.

September 2017 I had the private blood taken, results below:

Thyroid stimulating hormone 4.34 (0.27-4.2)

Free Thyroxine 14.1 (12.0-22.0)

Total Thyroxine (T4) 79 (59-154)

Free T3 4.1 (3.1-6.8)

reverse T3 15 (10-24)

reverse T3 ratio (17.79 (15.01-75.00

Thyroglobulin antibody 47.0 (0-115)

Thyroid peroxidase antibodies 37.6 (0-34)

Active B12 84 (25.1-165.0

folate (serum) >20.0 (>2.9)

vitamin D 165 (50-200)

CRP high sensitivity <0.3 90.0 - 5.0)

ferritin 54 (13-150)

calcium 2.32 (2.20 - 2.60)

Albumin 52 (34-50)

scan confirmed Hashimoto.

The Endocrinologist requested I had another further blood tests taken before seeing him again and then with my private bloods, scan and the recent bloods we would review the situation. In the meantime I started taken Selenium and had gone gluten free (September) as I was experiencing awful tummy pains, wind, bloating.

I have further blood taken in November 2017, (not full thyroid), I am yet to receive the official copy of the results with the ranges (I have always had to chase the blood results up). On the day of the appointment the results were written down as follows

TSH 1.8

Free T4 16.33

Calcium 2.33

Vitamin D 117

Vitamin B12 1106

Ferritin iron 81

FSH 5.2

This is how the consultation went:

I explained that I felt a lot better with my energy levels, and my concentration and my neck stiffness had got better, however, I still was suffering from freezing cold all the time, my muscles had started to hurt and be stiff and I still didn't feel 100%. I mentioned I had gone gluten free (he thought that was fantastic) and said I had been chatting on the Thyroid UK forum and I had been taking selenium.

We discussed my blood results, but he seemed to concentrate on the bloods of November 2017 that wasn't the full Thyroid. Basically I was told that as the TSH had improved to 1.8 there was no medication that could make me feel any better and improve the situation, in fact if I was given medication it would make me feel worse. I explained that I still didn't feel 100% and was this how my life would now be, he then said that he wanted me to have a second opinion (in London) to check that he has not missed anything. I mentioned I was in the process of seeing a nutritionist, that was a big mistake as then he focused on them making me better. He said I would suffer with Thyroid issues all my life, and when I started to feel bad to come back to see him and have further blood tests and then he maybe able to help more, but at the moment he can't help further as i've improved so much.

At present I am freezing cold all the time, and my arms and fingers are experiencing really bad stiffness (i cant explain it, I have to keep stretching them out). I have started experiencing tummy pains again despite me being gluten free, and my neck is starting to be stiff again.

The nutritionist has advised a range of test including a full thyroid again, blood sugar and gut test as she has had Thyroid patients.

I feel slightly ripped off as I have paid a lot of money to see this consultant, and been backwards and forwards with blood tests for vitamin levels and only TSH.

If I am honest I have had more help from all of you. I have read posts saying that people still don't feel 100% on medication and I was not sure if I wanted medication, but i am so confused that my anger is getting the better of me. The nutritionist isn't cheap either.

The consultant I was seeing happens to be on the list provided by Thyroid uk (appreciate its not a recommendation).

where do I go from here. I don't know what normal feels like anymore.

Best Wishes

peanut31

2 Replies
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Peanut31,

Not many people feel 100% even when they are optimally dosed, and I've seen it said that one shouldn't expect to feel more than 80% of what they previously felt.

Your thyroid antibodies are mildly positive for autoimmune thyroiditis (Hashimoto's). It is possible antibodies were higher prior to Sept and have dropped thanks to your gluten-free diet. Or, antibodies have only just become elevated and there has been a thyroid hormone dump which has raised FT4 and FT3 and lowered TSH.

There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it eventually causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies. 100-200mcg Selenium will also help support thyroid.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

NHS won't diagnose hypothyroidism until TSH is over range or FT4 is below range. Some (not all) private doctors will diagnose when TSH is >3.0 but I doubt any will diagnose when TSH is 1.8 which is considered euthyroid (normal).

Thyroid levels will usually fluctuate until Hashimoto's causes sufficient damage to the thyroid to make it unable to produce sufficient hormone and TSH will rise. While levels are fluctuating so much within range it is difficult to see how you can be prescribed Levothyroxine without overmedicating you. Still, there's nothing to stop you buying Levothyroxine or NDT and self-medicating to see whether symptoms improve.

I think it was unnecessary for the nutritionist to retest thyroid so soon as you already had TSH tested in November and FT4 and FT3 will almost certainly be in normal range with TSH 1.8.

You haven't included the lab ref ranges in the November results but FT4 16.33 is usually good and around mid-range.

VitD 117 is optimal but you may need to supplement 1-2,000iu D3 daily until March to maintain levels.

B12 1106 is usually high. If you have been supplementing B12 it will usually be over range.

Calcium 2.33 is usually in range and ferritin 81 is usually okay but optimal is halfway through range. I'm no good on FSH so I suggest you Google "FSH 5.2".

Reply

Thanks for the reply, I have not been provided the lab ranges for the November 2017 results, despite me chasing them. I am going to telephone the consultant secretary again tomorrow for them.

It has been on ongoing battle with all my bloods to get the official copies. The vitamin B12 results are high as you have pointed out, the consultant told me to take one b12 tablet every other day, instead of every day due to this high result.

Thanks again for your help

Best Wishes

Reply

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