Deep joy an honest GP who stated “out of my depth! “

[Miffie]

Following many months of poor test results and feeling grim I had an enlightening conversation with my new GP this morning.

Following a spell where I was on Tyro gold rather than Thyroid S things have been going downhill. By last MMH bloods in February gave:-

TSH 1.38 ( 0.27 - 4.2 )

Free T4. 4.8 (12 - 22)

Free T3 1.7 (3.1 - 6.8. )

She liked the TSH, however she had arranged for by blood to be tested on a different assay as I take ndt. She was told they would test TSH, fT4 and fT4. This in a letter from the lead consultant Biochemist ( I have a copy of the letter on my file). However the results came back TSH only as the duty biochemist decided that nothing else was needed. TSH has risen to 3.4.

Our telephone conversation this morning was based on my very symptomatic state and a refusal last October to reinstate Levothyroxine and the blood results over several years being very erratic with the surgery consistently keeping my fT4 at a maximum of 28% into range. I pointed her to results on levo only with TSH at 0.014 and fT4 at 24% while with TSH up at 5.6 at one point the fT4 was 2% into range. I suggested this made it tricky to know why I needed to increase TSH as the only examples of TSH in range are accompanied by fT4 at rock bottom.

As she gathered her thoughts I kept quiet and then she had to admit she was out of her depth. I need a referral to an endo, she is doing that today. We moved onto the chance of her now prescribing levo again. And it’s a yes, 50mcg sart with weekly increments, trusts me to judge things. They won’t do another TFT fir 8 weeks anyway so if I do have any MMH results please share them with her.

I do have and have started back on Thyroid S, however I think I will try a bit of levo plus Thyroid S until I hear from the endo. I don’t mind being honest about taking Thyroid S but perhaps in moderation until I know what endocrinologist may/may not do.

[Lotika]

Ah, Miffie, I guess it is progress of a sort. To be fair to the GP, those are some fairly confounding results, although it suggests that more tablets of some sort makes sense, so I’m with you about increasing before you see the endo. Surely they would understand why you don’t want to continue on those numbers for 3 months it however long the referral takes in the current situation. And - because it’s all about me, obviously! - I always feel a bit more hypo just *reading* about your blood results... Just... ouch! I can’t imagine how you manage to string together a coherent sentence without your head crashing into your keyboard and turning it into fianiuwr fiauenrv at intervals! Lotika x

[Miffie in reply to Lotika]

I am happy with the GP today, so much better than bluster and nonsense we often here.I did look her in the eye when she did the blood draw and told her I did better with good thyroid hormone levels than the accepted TSH levels. I think we understood each other.

Not so sure my keyboard activity stands scrutiny. Still we have lost the ‘early senility’ phrase from hypothyroidism symptoms. I do feel a bit befuddled quite often. Take care

[Lotika in reply to Miffie]

Gosh, yes, I forgot(!) that is a symptom of extreme hypo!

[JAmanda]

Just a thought and am no expert... Does it look like your thyroid meds have any thyroid hormones in them at all? Would it not be better to give them up and start on a decent amount of Levo? I do feel for you with those results. Trouble with taking meds outside the nhs guidelines they're under no obligation to help you much. Sorry I don't no your history and wish you all the best.

[Miffie in reply to JAmanda]

Thanks for your kind thoughts.I quite simply did not get on with Thyro gold. Not sure any ever stayed with me long enough to be absorbed. I have been on thyroid hormone replacement therapy for sixty years and have lots of lab results to back up anything I have done. I have been on them so long I was initially prescribed porcine thyroxine or ndt which ever name it’s the same product. It kept me better than levo ever did, I have never done well on levo and at my age haven’t got any more years to give away. 😄

I have decided I really don’t need my symptoms to get worse. Self pity maybe but I should imagine that with the most recent TSH showing that increase which always means a drop in fT4 it might now be around 0.

As she will not prescribe more than 150mcg daily no chance of feeling good anytime. soon on just levo, last time on that dose I was 2% into range.

Thanks again , take care.

[humanbean]

Have you come across the condition called central hypothyroidism? It is a condition in which the thyroid may be very healthy, but the problem lies with the pituitary or the hypothalamus, both of which are in the brain.

The hypothalamus responds to levels of thyroid hormones in the blood by producing something called TRH. If thyroid hormones are low TRH levels should rise.

The pituitary responds to those levels of TRH by producing TSH. If TRH levels are high then TSH should be high too.

The thyroid responds to levels of TSH by producing lots of T4, and to a lesser extent T3. If TSH is high then the thyroid will produce high levels of thyroid hormones.

In central hypothyroidism the body doesn't produce sufficient amounts of TSH. And this could be caused by a malfunctioning hypothalamus or by a malfunctioning pituitary.

If you are investigated and found to have a pituitary problem then you have secondary hypothyroidism.

If you are investigated and found to have a hypothalamus problem then you have tertiary hypothyroidism.

["Ordinary" hypothyroidism is referred to as "primary hypothyroidism".]

Have you had children? Did you lose a huge amount of blood during childbirth? If this happened then you may be suffering from Sheehan's Syndrome :

en.wikipedia.org/wiki/Sheeh...

The treatment for central hypothyroidism is replacement of the hormones that your thyroid should be making but isn't.

...

Be aware that doctors have dismissed many people with central hypothyroidism with the comment "It's very rare". They make sure it stays that way by massively under-diagnosing it. Don't allow yourself to be fobbed off - you have to fight for your health in this case. I know this is terrifying, but you don't have any other choice. If you have a husband/partner/relative or friend who could help I think you need to make use of them. I will not go to a doctor on my own because I so frequently get fobbed off. Just having my husband in the room reduces the number of insults and the amount of fobbing off I get.

[Miffie in reply to humanbean]

Thank you for your thoughtful reply. I have wondered in the past if there is more to it than simple thyroid damage. I say simple but as the tears pass and I move around having to change GPs I come across an increasing number of blank looks when discussing hypothyroidism in general and my circumstances in particular.

In was born with a particularly large birthmark on my face. This was 1951, I was given radiation treatment to remove it, I can remember going to a couple of later sessions so I understand it was carried out over a period of about three years although my mother was never specific.

A few years later I was diagnosed with hypothyroidism, a was told this was due to radiation treatment destroying the thyroid gland.

No problem originally as I was diagnosed so long ago I had ndt, everyone did.

I doubt it is Sheenhan’s Syndrome as I was diagnosed long before childbirth, as it turned out both born by C section, the first and emergency, second planned. Had to have blood after the first but not the second as I recall. That was back in 1979! I have needed blood following other surgery, but that was due to problems during the procedure last time.

Luckily I now have a referral to a Thyroid UK named endo so fingers crossed.

I don’t benefit from having husband present, he only once attended attended with me and the comment on my record doesn’t read well. 😏