Overwhelmed and feeling lost with a TSH of 98 !

[Elizabeth-_12]

Overwhelmed and feeling lost with a TSH of 98 !

I hope someone would be kind enough to give me some advice, I really don't know where else to ask.... Let me give you my history, I will try to be brief and stick to facts.

I am 55 yrs old I had a subtotal thyroidectomy 18 years ago. I was put on thyroxine for about 6 - 7 years and in that time never felt well. After that I was always within range and was told by my GP that my fatigue, inability to lose weight etc was all down to depression.

16 months ago my blood test showed my TSH was slightly over, so I was prescribed 25 mcg thyroxine.... it was incredible I felt great! But within a couple of weeks started to feel bad again.

So the GP kept increasing the thyroxine because I was always within range, and when it was up to 100 mcg I became very ill (physically & mentally) and also overactive. The GP didn't believe me when I told her I felt better on a lower dose of Thyroxine.

I read about the possible side effects, and slowly reduced the thyoxine and began to feel much better. I was referred to a consultant and told the consultant what had happened, and by that time I had not had any thyroxine since the 15th May.

About 6 weeks ago I had the following blood tests-:

Metanephrines 395 normetanephrines 117

thyroid stimulating immunoglobulins 1.98

IGF1 10.4 Prolactin 98 Cortisol 243

Magnesium 0.86 Potassium 4.8 Calcium 2.38

LFT's are normal Ferretin 384 Iron 19.7

Vitamin D 69.1 HbA1c 6.4% (46 mmol/mol) TSH 1.42

Free T3 - 5.0

About 3 weeks ago I started to put weight on and felt very, very ill. I had a TSH blood test last week, which came back very high, at 98! So I have now been back on 25 mcg of Thyroxine for 7 days and am seeing my consultant tomorrow (8/8/18).

What does this high TSH mean? Should the consultant test my T3? I'm very worried about the side effects of the thyroxine after my previous experience. A few months ago I bought some Synthroid and have been taking that for the last 7 days, rather than the Levothyroxine dispensed by the pharmacist, hoping that this may be less harmful to me.

I've read about Armour and the other natural versions, and they sound less likely to cause side effects. My consultant wasn't adverse to this when I mentioned it at my first appointment, and was willing to continue treatment if I chose to buy some. But I really don't know what to do for the best.

I'm sorry there's a lot here, and don't expect immediate answers, but if anyone 'knows' it would be useful to be pre-armed when I see the consultant, and I would be extremely grateful. I didn't ask before as I thought it was under control, but that 98 TSH shows there's something happening.........

My main question is why is my TSH so high? What causes this? Is it Hashimotos?

[SlowDragon Administrator]

Dose of Levothyroxine should be increased in 25mcg steps, retested 6-8 weeks after each increase until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Low vitamin levels are extremely common and need testing. Vitamin D, folate, ferritin and B12. Highly likely will need to supplement some to improve

Once dose is slowly increased over several months and TSH is low and vitamin levels optimal, if FT3 still remains low then you may need addition of small dose of T3

[Elizabeth-_12 in reply to SlowDragon]

Many thanks for the quick response, it's very kind of you and much appreciated.

The last tests of my vitamin levels done in April were all within range. I paid for a genetic test in June which shows I have a decreased ability of the enzyme DIO2 which generates the active T3 hormone. I'll be mentioning that and the vitamin levels to the consultant.

[shaws in reply to Elizabeth-_12]

All blood tests for thyroid hormones have to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of thyroid hormones and the test and take afterwards. This helps the TSH to be at its highest and may prevent the doctor adjusting dose down due to the TSH alone.

My TSH was 100 but I had to diagnose myself. I am now well thanks to TUK and by Doing It Myself now I have had enough of inept doctors ruining my health.

[fortunata in reply to Elizabeth-_12]

I was never well on Levothyroxine. I have the same DIO2 conversion problem. Showing the results of the genetic test to my doctor and endocrinologist was instrumental in my being prescribed Liothyronine (T3), which has given me my life back.

[jimh111]

It's possible your thyroid has failed and hence the high TSH along with weight gain. It's also possible you have high antibodies which have interfered with the TSH assay giving faulty results. Your consultant should measure your TSH, fT3 and fT4 along with antibodies to rule out the above possibilities. They should also carry out a physical examination to see to what extent you have signs and symptoms of hypothyroidism.

[Elizabeth-_12 in reply to jimh111]

Many thanks for the quick response, it's very kind of you and much appreciated.

In April my results for antibodies were:

Thyrogloblin antibody20.900 IU/mL range 0.00 - 115.00

Thyroide peroxidase antibodies159 IU/mL range 0.00 - 34.00

- well over!

The GP only tests for TSH - I paid for the test which showed the antibody results. The doctor didn't comment/seem concerned on this, and I've so many results it's hard to know which are the most relevant.

I will ask for more tests tomorrow.

[fortunata in reply to Elizabeth-_12]

You need to realise that your doctor may not know how to interpret your results. My doctor is also a personal friend. He retired some months ago and, when we had him round for dinner one evening, he admitted he didn’t really know much about the workings of the thyroid. He’d only had ‘half a day’s training about it’ and had never even heard of Hashimoto’s Thyroiditis when I told him that’s what I thought I had.

[helvella in reply to Elizabeth-_12]

I am sure that they have not tested for antibodies to TSH - neither NHS nor any private test.

If you are producing TSH antibodies, an antibody can attach to a molecule of TSH which forms a complex known as macro-TSH. In a TSH test, this can appear as a high TSH level. Some testing procedures are not affected by macro-TSH; others are.

If you (or your GP) contact the lab which did the TSH test and ask if their way of testing is immune to interference from anti-TSH antibodies you might get somewhere.

[greygoose]

First of all, if you are hypo, you cannot become hyper, it's a physical impossibility - especially if you don't have a complete gland. You could be over-medicated, but impossible to say if you were without seeing any labs.

Synthroid is thyroixine. It's the thyroid hormone T4. Hormones don't normally cause side-effects, they're not drugs. But the fact that you felt better on Synthroid probably means that it was the fillers in the tablets that was making you feel bad - or, that you were over-medicated.

Armour also contains fillers - you can't make a tablet without fillers. So, although the actual hormone comes from a pig, it might not suit you any better than levo. You would need to try it to find out.

As for the TSH of 98... You say that six weeks ago you had blood tests, and you give the results, but no ranges, so can't comment on them. Did you have a TSH test then? It says Free T3 5. Now, without a range, it's impossible to tell if that is high, but it actually looks quite good. And I very much doubt your TSH would be high with that FT3. So…

So, that means that your TSH has gone up to 98 in approximately 6 weeks. I rather doubt that is possible. The TSH doesn't move that fast… With that TSH of 98, did they do an FT4 or an FT3? If not, I can't imagine why. When a TSH suddenly rises, you need the other tests to confirm or negate it. But, if they didn't, I do wonder if it's not laboratory error.

Are you taking any form of biotin? Because that can skew results. Or, there's such a thing as TSH antibodies that can cause very high results like that. But, you would need to investigate to find out. a) retest but also test the Frees. If it's still high and the Frees back it up, then it means you're very hypo. b) if you are taking biotin, stop for a few days and retest. c) retest in a different laboratory to see if it's TSH antibodies. And, frankly, I am amazed that they put you on levo without doing any of that to check! That is sloppy doctoring.

[Elizabeth-_12 in reply to greygoose]

Many thanks to all three of you for getting back to me so quickly. It's much appreciated.

6 weeks ago the consultant requested blood tests, and my TSH level was 1.42, Free T3 came back as 5.0 (range of 3.50 to 6.80).

I'm not taking any form of biotin supplement. It's a good point that this shouldn't be happening, especially as I don't have a complete thyroid gland. I'm also wondering if the result is right now you've mentioned it.

In June I paid for a genetic test which shows I have a decreased ability of the enzyme DIO2 which generates the active T3 hormone. I will take all this up with the consultant tomorrow who will no doubt re-do all the recent tests.

Could it be Hashimotos?

[shaws in reply to Elizabeth-_12]

All blood tests for thyroid hormones have to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of hormones and the test and take afterwards. Otherwise results will be skewed.

You would need T3 to be added to T4 if you have a gene defect:-

thyroiduk.org.uk/tuk/testin...

[greygoose in reply to Elizabeth-_12]

Hashimoto's wouldn't give you an extra high TSH like that. To go from 1.42 to 98 in six weeks seems a little unlikely to me. It's not as if your FT3 was drastically low six weeks ago. There's either an error or interference in the test, such as TSH antibodies (not Hashi's antibodies).

[Bluedragon]

It is difficult to read the results without ranges - however, it does look like your ferritin is very high. I would ask for an iron check too. High ferritin is a sign on inflammation in the body. Very high ferritin shows too much iron in the blood and the need for giving blood. I don't think yours is at this level, more the inflammation.

Mind you, if your TSH level is at 98 - then you would have inflammation!

[Elizabeth-_12 in reply to Bluedragon]

Thank you!

The ferritin range is probably 30.0 - 400.0

which was on a result sheet in April.