Hypo issues or something else

[She773]

hi I’m on block and replace for Graves’ disease.

On last testing my TSH was 6.9 (t4 in range)

The time before it was 7.4 and had my levo increased to 100 and then on last results to 125 as it hadn’t reduced much in four months

Anyway the last couple of weeks my feet and hands are quite painful. It’s like a cramping pain and they feel as though they are seizing up, I also get arm and leg pain.

when I sit for a while, I get up and practically waddle as me feet are so sore

My hair has started to fall out and when I wake I’m exhausted (like I shouldn’t bother going to sleep as I feel as though I haven’t had any even after a solid 7-8hrs )

Is this caused by my Tsh so you think or is there something else going on?

I’ve been like this before you see and went on iv steroids for Ted for 12ish now I’ve come of the symptoms are back

thanks

[PurpleNails Administrator]

That TSH is too high. What was result & range of FT4 & FT3 if tested.

How much anti thyroid - carbimazole? Do you take.

How long have you been on block & replace B&R? Why was B&R chosen?

[She773 in reply to PurpleNails]

Hi

Ft4 16.6 (12.0 - 22.0)

They don’t test Ft3

Was put on B&R as my levels weren’t going in the right direction

I’m on 40mg carbimazole

[greygoose]

It's not the TSH itself causing your problems, even though it is much too high. TSH doesn't make you feel anything. But very, very likely it's your low thyroid hormone levels, because if the TSH is high, the thyroid hormones are usually low. Or could be low nutrient levels. Have you ever had your vit D, vit B12, folate and ferritin tested?

[She773 in reply to greygoose]

I thought that as I have been vitamin d deficient before now which wasn’t nice and sent me to a dark place so it’s always the first thing that comes to mind

[greygoose in reply to She773]

Could well be. But it could be - more likely to be - a combination of all your nutrients being low plus low T3. They all need testing to know more.

[pennyannie]

Hello again -

Do you think your eyes are any better having had the IV steroids for TED ?

On Block & Replace - the AT drug is fully Blocking your own daily new thyroid hormone production - and being Replaced by a measured dose of T4 - Levothyroxine.

The idea of this treatment option is to keep you on an even keel -

and through the use of these medications - manage to keep you - neither hyper nor hypo -

which I would have thought would see a T4 at around 50% through in its range with the T3 tracking just behind at around 45% through its range.

Since you are taking medications to control your T3/T4 thyroid hormones - it surely is logical that these are the blood tests that need to be run -

What was the T4 reading and range - Hypo symptoms can be experienced ' in the T4 range ' !

a TSH seen in isolation is of little value as to the success of this B & R treatment -

though looks very high but maybe suggests that your immune system has now calmed down and this phase of Graves Disease is over.

It would really help us, help you, if you could share a little bit of information with forum members - I replied to you, as did a few other forum members 7 months ago - but none of us received any information from you.

Just press your Profile Icon sitting alongside the My Hub - Chat - Post - Alert - Menu options -

top right on this sreen on my laptop - where you can read all you have ever written on this patient to patient forum.

[She773 in reply to pennyannie]

I was tested for vit D z, folate and ferritin which were all in range

[pennyannie in reply to She773]

It is not so much about being in the range - ' but where ' - as some ranges are to wide to be sensible -

and why we ask for results and ranges -

and because ranges vary throughout the country -

and generally. we feel best with optimal levels that tend to be at the very least 50 % through most ranges -

[pennyannie in reply to pennyannie]

You are legally entitled to copies of all your blood test results / ranges held at your Primary Care provider - and if not registered for ' on-line ' access - just ask the receptionist at your doctors for the necessary form to fill in -

Hospital results ultimately - I believe - also get copied into your medical records held at the doctor's surgery.

[SlowDragon Administrator in reply to She773]

I was tested for vit D z, folate and ferritin which were all in range

Please add actual results

Exactly what vitamin supplements are you taking

[She773 in reply to pennyannie]

My eyes are great now

I did 12weeks IV

Followed by oral tapering off and now on mycofenylate

It’s such a relief to have improved so much even though the damage is still there to be seen

I’ve been told I’m eligible for surgery!

[pennyannie in reply to She773]

Oh - so pleased to read this - such a relief - I was refused as my eye damage was seen as not ' bad enough ' - the psychological impact this can have on a person can be devastating - though mine occurred only after RAI thyroid ablation - a known side effect of that treatment option that no one tells you about -

anyway - so I would think the next phase is to get your T3/T4 thyroid hormones balanced in the ranges - with you feeling neither hyper nor hypo -

before surgery is even contemplated.

For reference I know now I need to maintain my ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 500++ ) and vitamin D at around 125 - based on Medichecks laboratory ranges.

[Gravie]

This has happened to me whilst taking Carbimazole only. First time exactly 4 weeks after dropping dose from 15mg to 10mg, had very bad lower back pain for a week and a half followed by joint pain in hands and feet.

Dropped my dosage down 5mg after a blood test, and magically all pain disappeared overnight. Then exactly 4 weeks later, food poisoning like symptoms, followed by very stiff neck and incredibly lethargic I was in bed all day. Dropped dosage 5mg again after another bloodtest and back to normal following day (both times with Dr consent).

Third time a month later experienced joint pain in hands only. Also started losing a LOT of hair for the last month or so. Dropped dosage again and now taking 5mg every second day.

The whole time my T3 and T4 were in the very lower end of range and TSH still < 0.01 so I believe, whilst I was technically in range T3 and T4, the range is too low for me and I have been over medicated (for me) as I seem to be very sensitive to Carbimazole. My last blood test which was soon after the last dosage drop my numbers are now at the high end of range and I feel good, hair loss decreased but still not back to normal, it’s too early to tell if I’ll get symptoms again at the 4 week mark. TSH hasn’t budged and has been <0.01 the whole time so don’t think this has any impact either and very likely the Carbimazole dosage has caused these issues due to such quick response to dosage changes.

[asiatic]

With a TSH that high you are overmedicated. Although B and R keeps you on a more even keel it does need the occasional adjustment and 40 mg Carbimazole is quite a high dose. You say you are on mycofenylate. I read a side effect can be low magnesium which could account for some of your symptoms. Perhaps think about taking a magnesium supplement.