Looking for some input on nasty symptoms of Hashimoto's

[kirkorov1]

Hello,

I am new to this forum, so wanted to say hi to everyone and ask for some input on my current problems.

I have Hashimoto's, which was diagnosed about 30 years ago (I am 61) and take levothyroxine 75mcg for the past 6 weeks (50 mcg before that). I have been experiencing some very nasty symptoms and hope to get some board members advice/input, though I am in consultation with and ENT specialist, endocrinologist and neurologist - I am a firm believer in having more than one opinion, especially from those that are in a similar boat to myself!

My symptoms are:

1. Almost constant tinnitus, but varying in intensity, mainly in the left ear, but sometimes also in the right ear.

2. Instability - this seems not to be vertigo or dizziness so much, but more a sort of disbalance or unbalancedness. This is not constant and sometimes disappears completely.

3. Tingling in fingers 1, 2, 3, 4 of the left hand. This is constant and extremely annoying.

4. Numbness in the left foot, which seems to be affecting only toes 2, 3 and 4 and is better when I get up in the morning, then seems to get worse throughout the day.

5. Similar numbness in the right foot, which seems to be affecting the same toes and most of the front part of the foot. This also seems to get worse throughout the day and foot becomes almost "wooden" at the end of the day and suffers from oedema.

6. Strange sensation in left shoulder blade, something like numbness - this is not constant and sometimes disappears altogether.

7. "Tightness" on the left side of my face and sometimes also the right - this is not constant and sometimes disappears altogether.

8. Constant muscle twitching all over the body, but especially in the feet and calves.

Here are the results of a pretty comprehensive blood test I had done less than two weeks ago:

Name of the test (research) result unitsbenchmarkmethod

hemoglobin 155 g / L 135-180 FC

erythrocytes 4.63 T / L 4,5 - 6,5 FC

hematocrit 0.45 L / L 0,40 - 0,52 FC

sr. corpuscular volume 97.3 fl 78-96 FC

sr. Hgb. Content. EP. 33.4 pg 28-33 FC

sr. Hgb. a concentration. in Eritrea. 344 g / l 320-360 FC

RDW-CV 14.7 10.8-27.00 FC

RDW-SD 51.2 % 28,2 - 51,8 FC

platelet 236 G / L 130-440 FC

total volume 0.2 % 0.01 - 9.99 FC

biochemistry

Name of the test (research) result unitsbenchmarkmethod

Total protein 69.5 g / l 60-84 PHOT

cholesterol 4.45 mmol / l <5:17 PHOT

triglycerides 2.07 mmol / l <1.71 PHOT

ASAT 27 U / l 6-37 PHOT

ALAT 57 U / l 0-49 PHOT

GGT 70 U / l <50 PHOT

calcium 2.4 mmol / l 2.1 to 2.6 PHOT

ionized calcium 1.27 mmol / l 1,06 - 1,32 PHOT

magnesium 0.9 mmol / l 0.7 to 1.2 PHOT

iron 12.4 umol / l 12,5 - 26,7 PHOT

glycosylated hemoglobin

glycosylated hemoglobin 5.6 % <5.7

glycosylated hemoglobin 40.2 mmol / mol 20-42

hormones

Name of the test (research) result unitsbenchmarkmethod

FT3 III 4.45 pmol / l 2.4 - 6.3 ECLIA

FT4 II 14.82 pmol / l 12.0-22.0 ECLIA

TSH 20:09 uIU / ml 0.27 - 4.2 ECLIA

MAT > 600.0 IU / ml <34 ECLIA

metabolites

Name of the test (research) result unitsbenchmarkmethod

Vitamin B12 1965 pmol / l 141-489 ECLIA

vitamin D 50.3 ng / ml > 30 ECLIA

homocysteine 10.6 umol / l 5-15 ELISA

I look forward to hearing from you guys!

[Clutter]

Hi Kirkorov1,

Can you confirm your TSH result? TSH 20.09 doesn't look right.

[kirkorov1 in reply to Clutter]

Hi Clutter,

Thanks for your response.

Yes, the result is 20.09 uIU / ml (0.27 - 4.2) on 23/06/2017

That is on 75mcg levo since 27/04/2017

Result on 27/04/2017 was 27.24 uIU / ml (0.55 - 4.78), prior to which I had been on 25/50 mcg for about two months.

These are different labs, so don't think there is any inaccuracy or mistakes in results

I am now on 125mcg since my last result to bring this TSH level down even more, but suspect I may have to up it even more on the next test in 40 days time.

I believe it may well be this that is causing my instability/balance problems among other things as it is well out.

[Clutter in reply to kirkorov1]

Kirkorov1,

In that case you were very undermedicated and the increase to 125mcg should reduce it. Arrange your next blood draw early in the morning when TSH is highest and fast (water only) beforehand as TSH drops after eating and drinking.

Your other results look fine.

[kirkorov1 in reply to Clutter]

Thanks, Clutter.

Yes, indeed - very undermedicated. I had been experimenting with Thiroid instead of levo for a good few months, changing doses, etc., etc., trying to feel my best. This turns out to be a major mistake for me, though looks as if some people achieve good results self-medicating.

I am being very careful in a lot of things ATM - one of them is bloodtests - only have them am and before taking levo, so always 24 hours without levo, no food or drinks, so believe I am not causing any inaccuracies there through my own carelessness!

Neurologist, endo and ENT specialist yesterday see no probs with my levels except thyroid hormones. (Luckily, I live in Bulgaria and not UK, so can manage to see 3 or 4 good specialists in one day if necessary - haven't been back to the UK for 10 years, but understand you can wait many months for a specialist these days in UK)

Your input is very much appreciated!

[Clutter in reply to kirkorov1]

Kirkorov1,

If you weren't taking sufficient Thiroid you won't have had good results.

It can be difficult to get specialist referrals and it's not uncommon for members to wait 6-9 months for an endo appt.

[kirkorov1 in reply to Clutter]

Very sad state of affairs in the UK

[kirkorov1]

It's my fault for self-medicating and maybe not taking things seriously enough, reallyfedup123. I am being/will be much more careful from now on and will not be self-medicating again!

[kirkorov1]

Well, I just chopped and changed on whim basically - not the way to do it and now see all my mistakes.

[kirkorov1]

Yes, I appreciate that. I was actually diagnosed with Hashimoto's about 30 years ago and have been medicated ever since. My levels were fine about 18 months ago on 125mcg levo and I was more or less OK, but a host of other factors that I won't bore anyone with caused me to "go off the rails" at that time. Hopefully back on track now.