Hypothyrodism

[EssentialHummus]

I posted on here late last year about feeling foggy, under-medicated and with heart palpitations on an increased dose of 75 micrograms of levothyroxine, and the resounding advice was we need to see actual numbers. I am seeing an endo next week, but does anyone want to have a go at interpreting these hot off the press blood test results?

I am still feeling incredibly foggy, struggling to concentrate, tired by 7pm, hair loss, and heart palpitations at least half the day.

Numbers in brackets are the range specified.

TSH 4.38 ( 0.27-4.20 ) mU/L
Free T4 21.5 ( 12.0-22.0 ) pmol/L
Free T3 5.1 ( 3.1- 6.8 ) pmol/L

[EssentialHummus]

And here are earlier test results, if anyone is that interested and helpful!

Pre-medication (Feb 2014)
Thyroid peroxidase antibody level: 173.50 IU/ml (0.0 - 5.61 IU/ml)
TSH: 4.16 mu/L (0.30 - 5mu/L)
Free T4: 13.2 pmol/L (8.8 - 18.8pmol/L)

Pre-medication (23 March 2014)
TSH: 4.10 (0.27 - 4.20 mU/L)
Free T4: 17.7 (12 - 22 pmol/L)
Free T3: 5.0 (3.1 - 6.8 pmol/L)

Prescribed and took course of Diclofenac - diagnosed with possible subacute viral thyroiditis.

Post-Diclofenac, pre-Levothyroxine
TSH: 4.42 (0.27 - 4.20 mU/L)
Free T4: 15.2 (12 - 22 pmol/L)
Free T3: 4.8 (3.1 - 6.8 pmol/L)

Thyroid peroxidase antibody level: 146 IU/ml (75 = Positive)

Anti Thyroglobulin antibodies 118 IU/ml (150 = Elevated)

Prescribed 25 µg Levothyroxine

On 25 µg Levothyroxine (May 2014)
TSH: 3.38 (0.27 - 4.20 mU/L)
Free T4: 16.5 (12 - 22 pmol/L)
Free T3: 4.7 (3.1 - 6.8 pmol/L)

Asked for increase to 50µg as still feeling extremely "foggy" (September 2014)

On 50 µg Levothyroxine (October 2015)
TSH: 2.64 mu/L (0.30 - 5mu/L)
Free T4: 15.9 pmol/L (8.8 - 18.8pmol/L)

[StarTravels]

I'm new to thyroid related problems but hopefully someone else will be along soon to help you properly!

In the mean time, I have read that it can take quite a few weeks/months for adjustments in thyroxine to start to reflect in your symptoms. How long since you increased your dosage?

I read you ideally want to be in the top 75% of the range for FT3.

You can calculate that like this:

1. Subtract the bottom of the range from the top.
   
2. Multiply that answer by the percentage (expressed as a decimal no.) say 75%=0.75
   
3. Add the bottom number of the range to the second answer. So you optimally should be at 5.87 - which you're not far off.
   

Could it be something other than your thyroid causing the problem? Have you had a full blood count and checked ferritin levels? I felt awful when my ferritin was very low. I think the symptoms are quite similar.

I've also heard some people have problems converting from T4 to T3, but since your T3 is almost optimal that doesn't appear to be the problem.

[EssentialHummus]

Thanks Star, that's helpful. I'd not heard of that calculation before.

I have Googled and read lots about situations like mine - high TSH, normal everything else - and what I've found seems to suggest that this is typical of an underactive thyroid (because the TSH is being released to try and stimulate thyroid productivity). Will see what the doctor has to say next week.

Ferritin levels are on my list to check.

Thanks again!

[Clarella]

I don't have much time to comment but I'm glad you're seeing an endo.

I'm puzzled by the high Tsh but I must say the endo I saw said some people do Need to sometimes be on much higher doses of t4.

Alternatively there could be a conversion issue to t3. This is the tricky area - it does happen.

Best book is BMA- understanding thyroid disorders by a toft - does describe this scenario. Worth getting before endo visit.

Difficulty with t3 is that levels can vary during the day as its half life is a couple of hours.

[Clarella]

I need to spend time looking at it all, sorry!

Looks like lots of antibodies though. Things could be still changing.

Very good blood panel though I'm pleased you're being investigated properly.

[Clarella]

I'd say your dose needs wacking up to 100-125

[EssentialHummus]

Thanks Clarella. I ordered the Toft book on your recommendation late last year but (oh the irony) am usually too zonked after work to read it. (Yep, it's that bad.) You also spurred me to get out all the test results, type them up and organise things, so I'm not faffing around looking for them.

Thanks for your detailed reply - I realise that the whacking great list of results is a lot to wade through. I am due the updated antibody results in the next few days, so the endo can have a fuller picture of things.

Thanks again

[Clarella]

It was mnetters that put me on to it as well as ferritin etc.

It is excellent.

It looks like classic thyroid disease (hashimotos) and your thyroid is probably slowly degrading. But really good you have endo referral. From my knowledge and I'm not a doctor, id say the Tsh keeps going up showing a need for more thyroxine.

The other results probably won't be helpful till you are on a stable dose and Tsh is stabilised.

One point to note - always get blood tests done around same time in morning and take thyroxine AFTER. Helps with a base line for t4 result. There's a bit of s circadian rhythm.

I would hope that as you still have symptoms they aim to get Tsh down.

I remember this time being tricky as one GP said "we don't want to dampen your thyroid down" - but I think they do go ahead and treat fully now. I think this comment was as the thyroid could be partially functioning. But with antibodies it's going to go at some point.

Toft book explains it - I think aim for 1 though I must say I tend to be best at 0.5.

I had thyroglobulin antibodies too. (19 years ago) I didn't know they still did these. Never been able to work out what they do. The peroxidase is the one they usually look for.

[Pleasemrstweedie]

These are slightly strange results. TSH is way too high for someone on meds, FT4 is pretty much spot on and FT3 could be higher.

I think I'd knock off 25 mcs of T4 and add some T3.

After all, it's good levels of T3 you need to for alleviation of symptoms.

What I don't understand though is why your pituitary is kicking out all this TSH when you already gave good levels of T4. It's the wrong response.

[EssentialHummus]

Thanks mrstweedie. I don't get it either. (I've doubled-checked that it wasn't just me transcribing the numbers incorrectly .)

I have booked in to see what seems to be a very qualified endo (privately, as the waiting list round my way is long and I am feeling crap). I really hope he has some idea. I am used to feeling energetic and doing a zillion things at once, and frankly as a City lawyer getting brain fog by 11am is making my working life terrible!

[EssentialHummus]

The remaining tests have come back as:

Thyroid peroxidase antibody level: 153 IU/ml (75 = Positive)

Anti Thyroglobulin antibodies: 112 IU/ml (150 = Elevated)

[Pleasemrstweedie]

Positive antibodies = autoimmune thyroiditis aka Hashimoto's Disease.

Word us that you can damp down antibody attacks, and therefore symptoms, by going gluten and dairy free, but a bog standard doc won't tell you that.

Check out Isabella Wentz for starters.

[Clarella]

I was puzzled by that Mrs Tweddle but wonder if it's an ongoing up and down response from antibodies and thyroid? Ie things are still changing.

I hope the endo referral goes well.

[EssentialHummus]

Thanks both. mrstweedie I'm having a look at her website now - thanks!

[StrictlyMumDancing]

Those TSH figures are so similar to mine (another Hashi's sufferer here) with occasional forays into the 7s, and I can't even get an endo or a levo trial so you've done really well.

I live gluten free now as pleasemrs has suggested and my antibodies have reduced massively (330 down to 124) - they were just rising and rising before. The worst of the anxiety and foggy symptoms have decreased too. I still suffer hair loss and other things, but generally I feel like I'm mainly living rather than just surviving. It may not help you, but there's no harm in trying (though ensure you don't go nuts on the processed stuff if you try and make sure you get the nutrients you'll miss elsewhere).

[ivykaty44]

Plesemrstweddle

I confused about what you have written

The pituitary gland pumping out lots of tsh as the t4 is already at a good level?

Looking at the this results they are getting greater in number indicating that the pituitary gland is shutting of the response...?

[Pleasemrstweedie]

That's the way I understood it, that the pituitary pumps outTSH when thyroid hormone levels, particularly T4 fall.

Here we have a relatively high level of TSH and also a high level of FT4.

That's how I understood it anyway, but I'm a historian, not a doctor.

[ivykaty44]

There is a high level of t4 as the op is taking it in the form of a tablet

The this suggest that the ops own body is not making t4 as the the is high - the higher the number the less t4 the thyroid will be making

The lower the number the more t4 the thyroid will make

For example if the tsh is low 0.09 then the thyroid will be pumping out vast quantities of t4, to much for the body and it will go into over drive and you need carbimizole to bind around the excessive amounts if t4

Or if the tsh is to high for example 5.00 then the thyroid is not making t4 and you need to take it as medication

[MummySparkle]

Ooh, I hope you get your answers and your endo is nice OP. I'm in awe of your detailed tests though. Last time I asked for my thyroid to be tested, when I called for the results all they had done was the TSH.

[EssentialHummus]

Thanks sparkle. Tbf, I think I just landed on a good GP. When I first showed up with a seemingly random, vague collection of symptoms (tiredness, poor concentration, poor memory*, constipation, weight gain) he first prescribed me with some fibre sachets to rule out symptoms they tasted 'orrible then ordered a complete blood workup. Thyroid stuff was flagged up. Went from there. When I called last week to get a referral to a private endocrinologist (using DP's health insurance) his response was to tell me that I could see an endo on the NHS too, if I wanted. He is overworked and not the cheeriest guy, but he seems to know his stuff.

I'll report back on Friday post-endo on the off chance it helps anyone.

*All skills you look for in a lawyer, right?

[ivykaty44]

You only get the TSH results if your t4 & t3 and TSH are normal in my health trust

If your results for TSH arent normal then you get the three results given in my health trust

Normal is different with different health trusts, so it will also depend on which part of the country you are in how your test results come back

[Clarella]

This is what puzzled me Ivy - As far as I understand things - the Tsh is rising. There are antibodies.

As thyroxine has been started and there's differences in the Tsh at each test I'm not sure how much the t4 and t3 can be relied on.

I would be interested to hear what the endo makes of the high t4, but I suspect that with the symptoms and the antibodies and the rising Tsh he'd suggest raising thyroxine.

[Clarella]

On the discussion of t3.

There are definitely people who have a 'conversion' issue and need t3. I met a woman in my local British thyroid foundation who was on t3 through endocrinologists. And Toft also says it is a possibility. And he also notes the ideal medication would include slow release t3. Which doesn't exist.

I find this article very helpful in explaining the current medical stand point on this.it isn't currently standard NHS practice but is available.

As it notes it's worth checking other causes of fatigue before exploring combination medication.

(The consultant is now advising the BTF.)

www.ncbi.nlm.nih.gov/pmc/articles/PMC3821462/

[ivykaty44]

Tbh the op is complaining of tiredness and palpation - with a t4 of over 20 through taking thiroxine I wonder whether the cause of the tiredness and palpitations is to much t4??

Have a high t4 does cause these types of symptoms

[EssentialHummus]

An update as promised:

After looking at my numbers and full history, the endo was really puzzled by the most recent results which showed high TSH with high T3 and T4 - to the point where he took me off for re-testing in case the lab had cocked up. The wording was something like, "I have looked at tens of thousands of thyroid test results and this is unusual." Lucky me He recommended I go down to alternating 50ug with 75 ug, as current symptoms - heart palpitations, shaky hands, rather loose stools (sorry, TMI) indicate that my dose is too high.

He also ordered tests for ferritin, adrenals and Vitamin D to rule out other causes of my feeling like death warmed up most days. I'll get results next week. I'll re-test thyroid levels and re-visit in two months or so.

Very nice guy and easy to talk to - he gave me a detailed diagrammatic explanation of the workings of the thyroid. He also answered my questions about whether a T3+4 prescription would be suitable for me (not at the moment), when to take meds (he doesn't think it's necessary to wait 30 min before breakfast) and a few other points.

The hospital (London Bridge) was not brilliant, but that's another thread!

We should have run a pools on this really