To ask here for a science explanation re thyroid levels and TCC please?

(37 Posts)
gladhoc Wed 13-Aug-14 17:45:24

NICE CKS recommend for a new diagnosis of subclinical hypothyroidism when pregnant or TTC:

"Aim for a TSH concentration in the low-normal range (0.4–2.0 mU/L) and an FT4 concentration in the upper reference range."

And yet, with symptoms, and TSH levels of double that, and FT4 at the bottom of the range, this does not apply to me? And apparently this is okay because these levels are "my normal"? (One test)

I am struggling with the logic and would welcome any insights into how the science of this approach works please?

I have had some excellent advice in General Health which has been much appreciated. I am just a bit overwhelmed with it all.

Many TIA

Lonecatwithkitten Wed 13-Aug-14 17:47:43

You are entitled to ask for a second opinion.

ADHDNoodles Wed 13-Aug-14 17:50:47

I'm not sure what you're asking, but my cousin has thyroid issues and her baby is just fine. My mother has thyroid issues and had no complications with her babies. smile

gladhoc Wed 13-Aug-14 17:54:01

I am trying to understand the logic of it.

RockinD Wed 13-Aug-14 17:55:15

OP has another thread on the General Health board which gives more background, but yes, another vote for a second opinion.

It is perfectly possible to have a normal pregnancy and a healthy baby if you are hypothyroid, provided you are adequately medicated. If you are not, then you are much more likely to struggle to conceive and/or to MC.

minipie Wed 13-Aug-14 17:55:22

Get a different doctor.

I had a TSH of 10 but normal FT3 and FT4 levels. Got put on thyroxine 50mcg/day (low dose). TSH dropped like a stone and I was pregnant within 6 weeks (after nearly a year of TTCing).

Go see a different doctor and ask for a low dose of thyroxine.

You could also point out that - even if you manage to get pg with those levels - since you are borderline, you will very likely tip over into overt hypothyroidism in early pregnancy - as many hypo women find their thyroid gets even more hypo in early pg - and so you would need the medication then anyway to prevent damage to the baby. (And by the time you know you're pregnant and get the tests done/get the prescription it's getting a bit late). So, better to give you a low dose now before you are pg.

Good luck.

minipie Wed 13-Aug-14 17:56:11

Oh and the answer is there is no science explanation - you just have a cautious doctor.

gladhoc Wed 13-Aug-14 18:09:32

That is my fear RockinD and minipie.

But how do they justify ignoring the guidelines? And so indignantly?

gladhoc Wed 13-Aug-14 18:11:49

And is it just hit and miss, keep trying doctors until one listens? I feel so short of time.

Pico2 Thu 14-Aug-14 18:41:11

I've seen two consultants during my pregnancy regarding my thyroid, one an endocrinologist and the other an obstetrician with a special interest in thyroid disorders. I have thyroid antibodies, which means that my thyroid is likely to fail at some point, but my TSH etc are within the normal ranges quoted, but not under 2 (I think 3.something). I was told that getting TSH under 2 was only the target for people who are medicated for being hypothyroid. Since I am not on medication already, they wouldn't advise starting medication to get my TSH under 2. Treating women who are TTC and pregnant who have not previously been on thyroxine is something that is done in the US, but isn't apparently normal in the UK. My thyroid function and antibodies are being monitored through my pregnancy and afterwards.

I've had a look at the NICE guidelines and you can get to this conclusion if you follow the definition of "subclinical hypothyroidism" through, as you (and I) wouldn't be diagnosed as having subclinical hypothyroidism due to normal FT4 levels and TSH under 4.5.

I do wonder if I might have conceived more quickly had my TSH been under 2.

I think you might benefit from knowing your thyroid antibody status (if you don't already know) as it leads to increased monitoring.

Bue Thu 14-Aug-14 18:57:51

gladhoc who are you seeing about this? GP or a fertility specialist? Mine is 2.5 and now that I am under a fertility clinic they are thinking about giving me a very low dose of levothyroxine if my re-test this month comes back around the same level. My consultant stressed that my level is completely normal but bringing it down to 2 could help.

Laurel1979 Thu 14-Aug-14 21:03:18

gladhoc are you currently on any Thyroid replacement? I wasn't sure from your OP if your query was about commencing Levothyroxine for the first time, or increasing a current dose.

naty1 Thu 14-Aug-14 22:03:47

I started treatment at 3. Something but during ivf.
It was 2 or so in 2011
3 in 2013 jul 1 yr after having baby
2.3 after starting levoxy in sept
But rose to 4.0 in feb after ivf
Increased dose down to 1.8
But tested again in aug and back up to 2.4
So i would say it continues to fail and i will have to keep upping the dose (as my sister has also done)

I think my gp said i had to be over 4.2 to have started treatment and get medical cert so have not been given that.

My ivf at 4 did fail but may have been unrelated.
They are not concerned about me being back up at 2.4 (although this is just under their limit of 2.5) and clearly it is still rising. I suspect it will be over this limit by the end of the month.

You could pay to see a fertility clinic they may be willing to put you on it.

My gp would still be trying to maintain me under 4 if i werent doing ivf.

What exactly is the issue?
How old are you? How long have you been ttc?

Thing is if i were ttc naturally it would be almost impossible to keep my levels under 2 as it is rising all the time i would need testing every 3 months or so, but i suppose that is because they are aiming for the minimum of 2.5 if i aimed for 1 i would have longer before i rose over 2.

My DSis though had unexplained infertility and had high tsh so was put on thyroxine but still had problems and went with
Ivf, though this has worked well.

You may be focusing on this but it could be a different issue.

Pobblewhohasnotoes Thu 14-Aug-14 22:14:38

When I was diagnosed my TSH was around 6, the aim was to get it to under 4. I think it fell to about 2.5. I did get pregnant but mc. When I fell pregnant again my dose was increased immediately. It sat around 1.8 during pregnancy.

I saw an endocrine and obstiatrician during pregnancy, everything was fine and DS was born last week!

Brittabot Fri 15-Aug-14 08:16:20

I have hypothyroidism and take levothyroxine to manage it, but it has not affected my fertility (to date, touch wood).

My GP thinks a TSH of 4.2 is fine, the endocrinologist I saw when pregnant said we should aim for close to zero but definitely under 2. My thyroxine dosage tripled while pregnant but I'm back to my usual levels now.

gladhoc Wed 27-Aug-14 14:34:21

Sincere apologies all for neglecting my thread, and thank you for your suggestions - I thought it had gone quiet.

To update, I saw my GP initially, with concerns raised by some initial private fertility investigations. The GP referred me to the endocrinology department at my local hospital. It was a couple of months wait, so I saw the consultant privately. He felt that TSH of 3.98, FT4 of 11.5 (10-22), and prolactin of 750ish would not cause any problems with fertility, or any symptoms at all. (I have lots of hypothyroid symptoms.)

He asked for the bloods to be repeated. 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.

sparechange Wed 27-Aug-14 15:04:00

You need to ask for another opinion, and even think about booking an appointment with a private IVF clinic.

I had a similar thing to you and was dismissed out of hand by my GP. My TSH was in the high 4s and my GP not even flagging it to me, let alone keeping an eye on it (it was being picked up in blood tests for 'unexplained fertility, I was only concentrating on the LH and FSH numbers)

At my first consultation, my (private) ivf clinic picked up on it and were amazed that the previous consultant and GP had ignored it. I was put straight onto Thyroxine, and without wanting to sound melodramatic, the difference was instantaneous. I can only compare it to having an extra couple of hours sleep a night.

A few weeks later, I went back to my GP with a letter from the consultant explaining that even though I was borderline a TSH result, in her opinion, the improvement in my physical symptoms was indicative that I was hypothyroid and could I please therefore be given the thyroxine prescriptions.
My GP flat out refused, and said they only way she would ever prescribe it is if I come off Thyroxine, and tests showed my TSH was above 5 for 3 consecutive tests. Even above 4.75, she would consider me a 'borderline' case and would monitor me, but not prescribe thyroxine. Obviously, this would be madness, so I'm stuck on private prescriptions of Thyroxine for now, but they are only £8 for a 3 month supply, and my previous IVF doctor is still willing to write them for me.

gladhoc Wed 27-Aug-14 15:55:34

Thank you, spare. At the moment I'm just trying to work out where to go next. I'm rather concerned I could waste time going to several people before anyone really listens.

HazleNutt Wed 27-Aug-14 16:00:08

Your GP's knowledge about thyroid levels is not up to date. For several years now, all recommendations have been that the upper level for TSH should be no more than 3-3,5.

gladhoc Wed 27-Aug-14 16:23:49

The GP says she doesn't have the knowledge, and is relying on the endo. The endo is patronising and arrogant and says I am normal.

I am going to ask him at what levels he believes symptoms, and fertility issues, start. I don't suppose it will help me, though.

I need another opinion, that's for sure. But I don't want to go down the IVF route yet. I just need to find a decent endocrinologist or someone who can help me!

HazleNutt Wed 27-Aug-14 19:37:43

I don't think there's any argument that hypothyroidism affects fertility.
One study here
Of 394 infertile women, 23.9% were hypothyroid (TSH > 4.2 μIU/ml). After treatment for hypothyroidism, 76.6% of infertile women conceived within 6 weeks to 1 year

Or here:
Generally, studies that found links between hypothyroidism and infertility considered women hypo over TSH 4-5.

gladhoc Wed 27-Aug-14 20:55:55

Thank you for that Hazel, really useful.

swlondonnanny Wed 27-Aug-14 21:43:16

gladhoc I am sorry you had such bad experience with your GP and endocrinologist as well.
I have been on thyroxine for over 30 years and even though my GP checks my levels quite regularly he doesnt agree with TSH being under 2 while TTC ( I get pregnant quite quickly but miscarry by week 5) After one of my miscarriages my TSH was over 10 and the GP said it is not connected at all bla bla bla.
So I went to see endocrinologist privately (someone who was highly recommended) she topped up my thyroxine and in no uncertain terms said what levels of TSH and T4 I need to be while TTC and how much more I need to take once pregnant again. Also if GP wasnt willing to follow what she said she would have sent me a prescription.
GP accepted the letter and kind of leaves me in charge of how much I take smile
Maybe someone on here could recommend good endocrinologist you could go to see? Local hospital might not be the best place to go.
I really hope you will sort this out quickly, from my experience whenever I am not on right thyroxine dose it really makes my life miserable...

HazleNutt Thu 28-Aug-14 08:40:22

I've heard so many stories like that - honestly, those GPs are like anti-vaxxers, no matter how much information and scientific research is available, they still refuse to believe it. Of course TSH over 10 would mean you're hypo and of course being hypo means increased risk for miscarriage. Gah.

I had pretty similar experience - am abroad and over here you have antenatal visits with a gyne every month. In theory he should have also kept an eye on my thyroid levels - in practice I told him every time that I also need a blood test and what dosage of levothyrox he should prescribe me based on the last test. Good thing was that he was just happy to prescribe whatever I asked, but surely I should not just be medicating myself?

DinoSnores Thu 28-Aug-14 09:55:34

"Your GP's knowledge about thyroid levels is not up to date. For several years now, all recommendations have been that the upper level for TSH should be no more than 3-3,5."

Which recommendations are these, HazleNutt?!

The exact reference range for TSH depends on the lab & assay but tends to be around 0.35-4.5mU/L.

On treatment, TSH should be within the normal range and there is no need in primary hypothyroidism to check free T4 normally. If the pituitary is happy (which secretes TSH), then the rest of the body will be happy.

If trying to conceive or pregnant, patients NOT on thyroxine should have a TSH within the normal range.

Patients TTC or pregnant ON thyroxine should have a TSH closer to the middle of the range.

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