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Thyroid results, any advice please?

(33 Posts)
gladhoc Sat 09-Aug-14 13:36:31

After thinking I was depressed and generally sickly for years, I've realised I seem to be hypothyroid. I've read lots of threads on here which have been incredibly helpful - thank you all! And I started the ball rolling with ordering some tests myself.

I'm seeing an endocrinologist soon, and wonder if anyone might have have any insights or advice please so I can be extra prepared. I am TTC, but have put this on hold for the moment.

I have raised prolactin - 737 (this is what alerted me to potential issues)

I did have a vitamin D deficiency (been dodging the sun due to facial pigmentation), which I corrected with drops - now at 143 (it was 20)

T4 67.2 (58-154)
TSH 3.98 (0.4-4)
FT4 11.5 (10-22)
FT3 5.30 (2.8-6.5)

FT4:FT3 ratio 2.2 (2-4.5)

rT3 0.30 (0.14-0.54)

TG 20 (0-40)
TPO 10 (0-35)

Iron 12.4 (6.6-26)
TIBC 63 (41.77)
Transferrin Saturation 20 (20-55)
Ferritin 53 (13-150)

Red cell folate 503 (158-1099)

Any thoughts at all? Many TIA

gladhoc Sat 09-Aug-14 13:38:19

I missed off the Active B12 - 68 (25.1-165)

Fairylea Sat 09-Aug-14 13:41:08

I am hypothyroid and have a pituitary tumour which secretes prolactin. My prolactin levels are normally about 2500. When I wanted to conceive the endocrinologist put me on dostinex which reduced the prolactin levels to about 200 which is normal ish (80-250 is normal) and my periods returned and I conceived within 6 months of being in the normal range (took 6 months before hand to get to that level. I stopped the dostinex as soon as I found out I was pregnant - I have two dc 11 years apart).

My thyroid is the least of my worries really.... I am on 175mg thyroxine and I have regular blood tests and they just adjust the dose accordingly. I still feel a bit generally run down but if I increase the dose I get jittery and anxious so I am happy to stay where I am. I have had it for about 10 years now.

The main thing is regular blood tests and finding a consultant you can trust. I have asked to swap several times (uk nhs by the way).

Pobblewhohasnotoes Sat 09-Aug-14 13:51:24

I'm similar in that my prolactin was 2000 before they discovered my prolactinoma. I was started on medication and my periods restarted. You can't conceive with a high prolactin level but mine came down really quickly. I'm also hypothyroid but only on a small dose. It's important to be well controlled if you want to ttc, as there is a risk of miscarriage and it can affect the baby's development in the first trimester. I mc a year ago and my dose was increased when I became pregnant again. Your TSH needs to be lower ideally below 2. I also have a Vit D deficiency.

Blistory Sat 09-Aug-14 14:08:41

As far as I can recall the TSH level should be below 2 if you're trying to conceive so it's important the endo knows about this.

You'd probably feel better if your b12 and ferritin levels increased.

gladhoc Sat 09-Aug-14 19:15:16

Thank you all.

Fairy and Pobble it's really encouraging to hear how things can be controlled.

And Blistory, I'm going to look at getting those levels up.

I'm a bit befuddled as to the cause of this really, is it just one of those things?

RockinD Sat 09-Aug-14 19:23:27

Here's the NICE Guidelines you need:

cks.nice.org.uk/hypothyroidism#!scenario:3

gladhoc Sat 09-Aug-14 19:46:04

Great RockinD, thank you.

Lonecatwithkitten Sat 09-Aug-14 20:10:26

Your local B12 range is really very low. In my area below 170 is considered low and all your symptoms would fit with B12 deficiency as well as thyroid.

Annietheacrobat Sat 09-Aug-14 20:39:19

Lonecat they are probably using a different assay if the top end of their normal range is below the bottom end if yours.

CatHackney Sat 09-Aug-14 21:22:00

Like others said - be very clear with your endocrinologist that you're TTC.

Your thyroxine needs can go up quite a lot during the first trimester of pregnancy, so it's very important to have blood tests regularly in the first trimester. My hypothyroidism was well controlled when I started TTC, but after speaking to an endocrinologist, I raised my thyroxine dosage in anticipation of becoming pregnant and then it was raised again during pregnancy after a blood test found that my levels were a bit low. For a few months after the birth, my levels were all over the place, but I'm now back to pre-TTC medication levels.

gladhoc Sun 10-Aug-14 14:18:55

Right - I have a plan. Thanks all, it's such a lot to get to grips with.

gladhoc Tue 12-Aug-14 16:35:43

Help - I've seen the endocrinologist, he says my levels are normal, and I'm not hypothyroid.

He said this before asking me about any symptoms. (Hair loss, exhaustion, struggling with weight etc.)

He says the guidelines RockinD to would only apply if I'd been treated for five years or so, and that this is my normal so no possible implications for a pregnancy.

He's insisted on repeats of the tests though the NHS - which I can understand, but if levels are same he won't treat.

He says prolactin at that level won't be stopping me getting pregnant as my periods are regular.

Is he right???

I am at a total loss.

gladhoc Tue 12-Aug-14 16:49:46

I explained about the choking sensation. He didn't examine my neck.

RockinD Tue 12-Aug-14 19:54:22

You are nearly at the top of the range for TSH and almost bottom of the range for FT4. He is disregarding the NICE guidelines and I would be concerned that you might not be able to conceive and/or maintain a pregnancy with these levels. I am really not impressed by this man.

Just spotted your reference to facial pigmentation. Add that to the fact that a quick Google search will tell you that high prolactin levels may interfere with conception and it's beginning to look as though you would be well advised to get a second opinion.

www.patient.co.uk/doctor/Hyperprolactinaemia.htm

www.foresight-preconception.org.uk/

RockinD Tue 12-Aug-14 19:55:32

PS - one cause of high prolactin levels = hypothyroidism!

My prolactin level was rising exponentially until I got my thyroid treated.

gladhoc Tue 12-Aug-14 23:08:24

Thanks again RockinD. I just feel really weary about it all. How do I best go about finding someone who will take me seriously? Apart from the fertility issue, I just don't feel well.

The GP's referral looked very long - I get the impression she didn't take it very seriously either.

gladhoc Wed 13-Aug-14 17:46:36

I have posted about this in AIBU too. I am struggling with the logic!

naty1 Sat 16-Aug-14 11:25:28

How long have you been ttc?
As after 2 yrs they should investigate anyway.
How old are you? You can expect ttc to possibly take longer over 35.
Do you have a short leuteal phase? This is a symptom of hypo.
You could take your temp every morning. Think this avoids certain days of your cycle, this will show if your temp is very low.
Mine is very low.
What is your progesterone on day 21 like?

You saw the endocrinologist privately or nhs?
Are you overweight?

gladhoc Wed 27-Aug-14 14:39:56

Sorry naty and thank you for your suggestions - I thought the thread had had gone quiet.

I am 38, at the top of my BMI range but not overweight. Trying for 18 months.

Luteal phase and 21 day progesterone not investigated. It was the local NHS endo, but I saw him privately to save time. The temperature taking is a good idea, thank you.

So far, TSH has gone up to 4.38, FT4 is 14 (12-22) and my prolactin is now 988. I am seeing him again on Tuesday, but am not hopeful he will want to do/investigate anything at all.

The surgery cancelled my NHS referral (despite me saying I only wanted to get some initial advice,) which is frustrating, as now I am not in the system at all. My grandmother died in her 50s with adrenal problems, so I am keen to find someone who doesn't just think this is all in my head and is prepared to look at the whole picture.

RockinD Wed 27-Aug-14 19:36:54

You need to tell him about your grandmother.

You also need him to LISTEN.

gladhoc Wed 27-Aug-14 20:51:51

I did tell him about my grandmother with the adrenal issues. He was rather dismissive as at the time I wasn't sure if it was a tumour. He said if cancer - it was irrelevant. So I ordered a death certificate (it was a very long time ago) and it was basically a stroke. But I managed to find out that a few months before she died she'd had an adrenal gland removed, never recovered, and that she'd been ill for a long time with adrenal problems.

My other grandmother was treated for thyroid issues as a young woman. He was also dismissive of this.

I'm going to take someone with me this time, but even so, he seems determined to explain everything away as stress and "my normal". The only stress I'm under is not being listened to.

Blistory Wed 27-Aug-14 21:07:34

He's not going to listen to you so be prepared.

Ask him what harm a trial of thyroxine would do, particularly given that the guidelines clearly state your TSH should be lower than 2 if trying to conceive.

Ask him why your various tests show rising levels.

Ask him what he would do if his wife's results were the same as yours and she wasn't conceiving. Bet he'd be recommending something.

It's crap being stuck with an endo who refuses to listen so you're better off asking for help on one of the thyroid forums as they'll be able to point you in the direction of reference material that backs up your case.

B12 - try sublingual tablets. You can get these levels up easily enough. Same with your ferritin - treat that yourself. And if he upsets you, remember that it's absolutely fine to want to be in optimum condition for TTC.

Good luck and stand your ground if need be.

gladhoc Thu 28-Aug-14 10:47:56

Thank you Blistory, I will be asking those questions, trying the B12 tablets and being proactive about helping myself!

gladhoc Tue 02-Sep-14 19:58:55

Well, total turnaround. Trial of thyroxine and investigating the prolactin. Can't quite believe it. So relieved.

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