New to forum and seeking advice

[Kizzygirl]

This is my first post but I’ve been reading with interest for a while. I was diagnosed with Hashimoto’s about 15 years ago at the age of 40. I have taken 150mcg Levo since then. I felt generally well apart from being unable to lose extra weight, about a stone and a half refused to shift despite being very active.

A year ago my annual blood test showed TSH of 0.03 and T4 was 9. Sorry but I don’t have the ranges. GP said I was over medicated and reduced Levo to 125 on alternate days. A year on and TSH was 0.05 and T4 was 7 according to the nurse at the surgery. I was well and had begun to lose weight! GP now says I must continue to reduce Levo which I have done, 125 daily for last 2 months. I am certainly more tired and sleeping for at least 10 hours a night and feel sleepy mid afternoon so I’m feeling worried about continuing to reduce but perhaps that is the right thing to do. A recent ultra scan on my thyroid shows that the gland has been pretty much destroyed by Hashimoto’s according to the sonographer.

I have my blood results back from Blue Horizon and would really appreciate any advice.

TSH 0.10 (0.27- 4.2)

Total Thyroxine T4 104 (59 -154)

T3 3.6 (3.1 - 6.8)

Reverse T3 24. (10 -24)

TP Antibodies 339 (0 - 34)

[SeasideSusie Remembering]

Can you post the full results please. Blue Horizon do bundles and it looks like you've had one of those, so we need FT4 (also called free thyroxine) and did you have vitamins and minerals tested?

You need the ranges from your NHS results so you should ask your surgery's receptionist for a print out of your test results. As ranges vary from lab to lab it's not possible to know where your FT4 lies but it it looks as though it might be either at the very bottom of range or even below range, in which case your GP should not be reducing your dose of Levo.

As you have Hashi's , are you strictly gluten free and supplementing with selenium l-selenomethionine to help reduce the antibodies?

[Kizzygirl in reply to SeasideSusie]

Yes I did have the package of tests from Blue Horizon. The other results are below.

Free T4 19.4 (12-22)

B12 622 (197-771)

Folate 6.5 (<2.9)

Ferritin 123 (13-150)

CReactive Protein 0.7 (<5.0)

25 OH Vitamin D 108 (50-200)

I’ve only recently read about the gluten thing, I didn’t know this so I’m not gluten free. I will look at the selenium supplementation as well, again I didn’t know. As I’ve felt well on my dose for so many years I have just taken my tablets every day and never really delved deeper. I have lost almost 2 stone over the last 18 months so perhaps I now require less Levo?

I will ask for a print out of past results from my surgery, obviously it’s hard to know what they mean without the ranges. Thank you for your help.

[SeasideSusie Remembering in reply to Kizzygirl]

TSH 0.10 (0.27- 4.2)

Total Thyroxine T4 104 (59 -154)

Free T4 19.4 (12-22)

T3 3.6 (3.1 - 6.8)

Your TSH is in a good place, and you have a good level of FT4. Your problem lies in your low FT3 and those results indicate that you are not converting FT4 to FT3 well enough. Low FT3 will cause symptoms.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges if that is where you feel well.

Good conversion takes place when FT4 :FT3 ratio is 4:1 or less. Yours is 19.4/3.6 = 5.38 : 1

You need the addition of T3 to your Levo. No longer easy to get on the NHS but you could always ask for a referral to an endocrinologist. If you do get referred, then before making an appointment email Dionne at [e-mail] for the list of thyroid friendly endos. You need one with an interest in thyroid as most endos are diabetes specialists. You can ask on the forum for feedback from members for any you can get to.

The alternative is self sourcing T3 and self medicating which a lot of us do.

Fortunately your vitamins and minerals are good, which is surprising as Hashi's can often cause low nutrient levels.

[Kizzygirl in reply to SeasideSusie]

Thank you so much for your help and for explaining it so clearly. I do take a good range of supplements so I guess that has helped, I need to add selenium!

[jimh111]

Although your gland is pretty much destroyed it can still pump out quite a bit of hormone if agitated by antibodies. It's possible you are getting autoimmune flare ups, which are causing your low TSH by releasing T3. They would need to do one or two TSH, fT3 and fT4 assays to confirm. More likely is that your hypothalamus / pituitary are underperforming and that you are now hypothyroid, as indicated by your symptoms. Your doctor should be guided by your signs and symptoms since your blood test results are inconsistent (low TSH, low fT4). The TSH is only of (limited) use when the thyroid axis is functioning correctly. e.g. high TSH / low fT4 or low TSH / high fT4.

Point out the discrepancy between your TSH and fT4 and make sure the doctor is aware of your symptoms. (I'm assuming your fT4 has a typical reference interval of e.g. 10.0 - 21.0).

[SilverAvocado]

9 and 7 sound like very low freeT4 results, as usually the range is about 12-22. But on the BlueHorizon your freeT4 looks pretty good.

You don't have much room to raise your Levo, but would probably feel better with a higher freeT3. Ideally you want that in the top third, and yours is at the bottom.

Unfortunately the NHS is very bad with treating this It's worth jumping through the hoops to try and get T3, but be prepared to be turned down. Buying your own is definitely an option, many here have to do it.