Thyroid Troubles

[Dizzo]

Afternoon All,

First time poster here.

I’ve been Hypo for 10 years now from my early 20’s and was forced to switch from Lio to Levo about 5 years ago.

Prior to the switch I felt amazing but following the move to Levo (Endo review by NHS forced this) I have struggled.

Admittedly I have probably been a bit naive about the condition and not always taken my Levo meds as I should have, but last year I realised i needed to start taking better care of myself so went for a blood review in early November and bloods showed as follows:

TSH - 11.4

T4 - 17.6

I had been on 150mg of Levo but as I mentioned previously, I had not been consistent in taking my pills, but from October I started being consistent and things quickly spiralled downwards.

I got to early December and I felt like I was going crazy, had massive anxiety, over emotional, irrational thoughts, insomnia, lost weight and I ended up having 3 weeks away from work etc asked for another blood test just before Xmas and my results were:

TSH - 2.6

T4 - 26.8

The doc subsequently cut my Levo to 100mg and I started to feel a bit better and managed to go back to work at the start of Jan and thought that was it.

On Tuesday I slept terribly (4 hours) but managed at work but Wednesday I only got 2-3 hours and I ended up breaking down at work and left in the afternoon.

I was having anxiety about functions of my job I have done for a number of years without issue, but suddenly they seemed impossible for me to be able to do them. I went home and haven’t been back since.

My job is to look after a team of 7 and it does have stressful elements which have ramped up over the last 2 weeks.

I have more bloods being done Monday but I wanted to see if anyone else had similar experiences?

If I don’t work I don’t pay my bills and SSP doesn’t cover anything so I have to go in, but I’m worried it’s detrimental to my health to force myself to work when I’m struggling.

Docs has tried to get me to take antidepressants and sleeping tablets but I want to avoid them as I was convinced it was thyroid hormones causing the issue.

I’ll post my results when I get them Monday / Tuesday.

I have expressly asked for T3 but my GP says the lab won’t do them if T4 and TSH appear “normal”

Does this sound like I might still be over medicated given my symptoms?

[SeasideSusie Remembering]

Hi Dizzo and welcome to the forum.

Can you please add the reference ranges for your test results. Ranges vary from lab to lab so we can't intepret them withour your lab's ranges. They will look something like

TSH: 2.5 (0.2-4.2)

FT4: 19 (12-22)

There's not much to go on at the moment so when we see your new results next week we can possibly comment further.

However, for a full picture of thyroid status the following are needed:

TSH

FT4

FT3

Thyroid antibodies - TPO and Tg

The big difference in your TSH and FT4 results makes me wonder if you have raised antibodies which confirms autoimmune thyroid disease, aka Hashimoto's, which is where the thyroid is gradually destroyed, and the fluctuating levels of antibodies cause fluctuations in symptoms and test results.

And because we need optimal nutrient levels for thyroid hormone to work the following also need to be tested:

Vit D

B12

Folate

Ferritin

Many of us here can't get everything done with our GP so we do private tests with one of the labs recommended by ThyroidUK.

All the above tests are included in Medichecks Thyroid Check ULTRAVIT or Blue Horizon Thyroid Check PLUS ELEVEN. Both can be done by fingerprick or venous blood draw for extra cost.

What was the reason your endo stopped T3?

When you have your bloods done on Monday, follow the advice we always give here which is:

When booking thyroid tests, we advise:

* Book the first appointment of the morning. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw.

* Leave off Levo for 24 hours before blood draw, if taking NDT or T3 then leave that off for 8-12 hours. Take after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

If you have an early appointment booked for your blood draw, it's best to cancel and rearrange for the first appointment of the day even if you have to wait a few extra days.

[Dizzo in reply to SeasideSusie]

Hello there.

I don’t have my ranges unfortunately, presumably I get these from the surgery?

It might well be that I need to pay for a private test.

My original thought was that my first levels showed as they did because I wasn’t consistent in taking my pills so it was an “average” blood read.

Whereas decembers was after a consistent spell of taking the pills which why it showed high.

Thanks for the advice, I will be sure to take those tips on board.

Is it normal to experience the symptoms I described if you are over/under medicated?

[SeasideSusie Remembering in reply to Dizzo]

After any tests at the surgery, once you know they are back and have been seen by a doctor (usually a couple of days) you can pop along to the reception desk and ask for a print out. We are legally entitled to our results here in the UK, without charge. You don't have to give a reason for asking for them, if you feel the need just say "for my own records". Don't accept verbal or hand written results, a print out will have all the information needed and there can be no mistakes.

felt like I was going crazy, had massive anxiety, over emotional, irrational thoughts, insomnia, lost weight

These can be "hyper" symptoms which you would get if you were overmedicated.

TSH - 2.6

T4 - 26.8

The FT4 result is probably over range but we don't know by how much. If slightly over range I wouldn't expect those symptoms, if very over range then yes you could get those symptoms - this is why the ranges are important

But the TSH is actually too high for that FT4 result, one would normally see a very low TSH with a high FT4.

However, where there are positive antibodies, therefore Hashi's, then symptoms/results can swing from hypo to hyper, that's the nature of Hashi's. When in a hyper phase it's a good idea to reduce Levo, then when you swing back to a hypo phase the Levo is increased.

[Dizzo in reply to SeasideSusie]

Afternoon, now had my bloods back and no surprise but the T3 wasn’t tested.

Results in December were:

T4 - 26.8 range 12 - 22

TSH - 2.61 range 0.27 - 4.2

I was dropped to 100mg (from 150) and bloods repeated this week show as follows:

T4 - 22.2 range 12 - 22

TSH - 5.47 range 0.27 - 4.2

The results would indicate my thyroid is working harder and I would need more levo, but equally if at the top of the range anyway.

We have dropped my levo from 100mg to 75mg and I have been referred to the Endo at the hospital to discuss so I shall be pressing him on the lack of testing of other pertinent areas and also T3.

Bloods did show my haemoglobin was high so have to go to have a liver ultrasound and speak to the heamotology department to rule out anything nasty.

Can’t really ask anymore from my GP, she has done more than I could have asked for really.

What are your thoughts on the levels / fact my haemoglobin is high?

They did check my 02 sats earlier and these were fine.

[Dizzo]

Thanks, I do take Vit B complex supplements along with vit D3 and COD liver oil.

They didn’t test my T3 again but I do have a referral to the Endo so will be giving them a hard time when I see them.

I’m not sure I can eat liver as it’s high in iron and I have an increased haemoglobin level at the mo which they are monitoring.