Please help! Pregnant & Worried about levels

[Mk141209]

Hi everyone, I hope you're well and able to offer me some advice.

I was diagnosed with hypothyroidism 5 months after I gave birth to my son (April 2018). I was told it would only be temporary as it was post-partum but unfortunately my symptoms are not really improving.

Basically, every 6 weeks my bloods were checked and the Levo dose was increased. This was sometimes not done every 6 weeks as I travel often or it was a case of the Drs being unreasonable about a dose increase despite it being clear in black and white!!

Long story short, I am now 5 weeks pregnant. I had a blood test on 21st March 2019 before I found out I was pregnant. I also had FBC (fine) and Ferritin tested which was low and I have been prescribed meds for. (Unfortunately, I have never been tested for FT3, TPO and TG thyroid antibodies).

The results were as follows, but I was just told to retest in 6 weeks:

___________________________________________________________________________

Serum ferritin level 11 ug/L [10.0 - 204.0]

Thyroid function test

Serum TSH level 5.23 mu/L [0.35 - 4.94]

Above high reference limit

Serum free T4 level 9.7 pmol/L [9.0 - 19.0]

___________________________________________________________________________

After meeting a senior GP on Tuesday, I wanted to speak about the Levothyroxine dose increase in pregnancy I'd heard about. I was booked in for bloods for today (Thursday). My bone profile came back ok, vit D was tested and is low.The results are as follows:

______________________________________________________________________________

Serum calcium level 2.29 mmol/L [2.03 - 2.45]

Calcium adjusted level 2.38 mmol/L [2.2 - 2.6]

Serum albumin level 36 g/L [35.0 - 50.0]

Serum 25-Hydroxy vitamin D3 level 39.4 nmol/L [> 50.0]

Below low reference limit

Thyroid function test

Serum TSH level 8.11 mu/L [0.35 - 4.94]

Above high reference limit

Serum free T4 level 13.3 pmol/L [9.0 - 19.0]

___________________________________________________________________________________

The same GP is the one who saw my results, yet the Receptionist said there will be no dose increase. What is really worrying/frustrating is that he said, if my results come back similar or worse off than the March ones, then I would receive an increase?

I am sorry I was not tested for Folate or B12 either. I will be looking to get private bloods done myself but for now I really would like some advice as I am really worried about the pregnancy and I can cut up tablets if necessary for the time being.

Also, it is really annoying that he has taken me off the Iron medication simply because I am taking Pregnacare which contains 17mg per tablet (meds were 210mg) I am so out of breath and dizzy and I think the pregnancy nausea is exacerbated due to the Iron deficiency. I had this throughout my last pregnancy despite also taking the Pregnacare. It just infuriates me that they make us more ill and we just have to keep running back and forth and begging for the correct medication. Can I not request to be referred to an Endo? It has never even been mentioned.

Thank you for reading this super long rambly post.

Malaika

[SlowDragon Ambassador]

Suggest you make emergency appointment with any GP at practice today

TSH should be under 2.5 for pregnancy

Pregnancy guidelines

thyroiduk.org.uk/tuk/about_...

gp-update.co.uk/files/docs/...

See pages 7&8 "Dose should be increased by 25mcgs as soon as pregnancy is confirmed"

btf-thyroid.org/images/docu...

Your vitamins are all low because you are hypothyroid

Clearly your GP MUST test folate and B12

Politely insist on Thyroid antibodies being tested too

Coeliac blood test recommended if antibodies are high

Are you now supplementing vitamin D?

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Your ferritin needs improving, but NHS guidelines say don't eat liver or liver pate

nhs.uk/conditions/pregnancy...

[Mk141209 in reply to SlowDragon]

Hi SlowDragon,

Thank you so much for your reply.

I couldn’t get any appointments after my message and I asked for a Dr at the surgery to atleast look at my notes but they only just got back to me today. The receptionist just called me to say ‘my TST’s are fine’. Whatever that is supposed to mean.

I have started taking 300mcg in the evenings and I am not even going to bother telling the GP’s. This is just out of order. I have been prescribed Vitamin D so yes, I’ve started that. My best bet is gonna be private treatment I reckon.

[SlowDragon Ambassador in reply to Mk141209]

You can book an emergency appointment on the day. Ring up every hour until you get an appointment

You say you are going to "start 300mcg"

300mcg of what???

See the practice manager and insist on an appointment

Print out the guidelines in my first reply and highlight sections that add appropriate

[Mk141209 in reply to SlowDragon]

300mcg of levothyroxine, i will try but they just do 2 book on the day phone slots and i actually book online as I’m more likely to get an appointment. Otherwise, it means going to a walk in centre but I think it’s best to see someone at my own surgery. I will try to contact the practice manager. Thanks SD

[SlowDragon Ambassador in reply to Mk141209]

How much Levothyroxine were you taking already?

Levothyroxine should only ever be increased in 25mcg steps

Starter dose is 50mcg

[Mk141209 in reply to SlowDragon]

I was on 200mcg, only took 300mcg the past two nights

[SlowDragon Ambassador in reply to Mk141209]

You should only ever increase Levothyroxine by 25mcg

The fact you are already taking 200mcg Levothyroxine and have high TSH suggests you have poor gut function and almost certainly your hypothyroidism is due to autoimmune thyroid disease

Suggest you go to see GP with a supportive friend or family member and point out clearly your TSH is way above guidelines and that

Insist on referral to endocrinologist

Request GP test both TPO and TG thyroid antibodies, and politely insist on folate and B12 tested

Low B12 and/or folate is implicated in baby's neurological development issues

Or get tested via Medichecks privately ASAP

Your Vitamin D is extremely low, as is ferritin. It's therefore possible/likely that folate or B12 are too

How much ferrous fumerate has GP prescribed? 2 or 3 per day?

Taking vitamin C with each iron tablet can help improve iron absorption

How much vitamin D did GP prescribe?

Guidelines recommend a minimum of 1600iu per day for 6 months

Local CCG guidelines

clinox.info/clinical-suppor...

Are you on strictly gluten free diet?

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Email Dionne at Thyroid Uk for list of recommended thyroid specialists, see if there's a recommended endocrinologist near you

[Mk141209 in reply to SlowDragon]

This is my first post here and honestly, it always amazes me how helpful the general public are in comparison to these so called “experts”! Thank you so much for your incredible knowledge and help.

Okay so, i did alot of research online and there was an American dr on youtube who mentioned a leaky gut’s connection to thyroid issues so I have had my suspicions but didn’t know where to go further.. but I do now thanks to you!!

I am going to sit at the Doctors surgery all day tomorrow if I have to until I see someone. I’m going to print out everything you have referred to and ask for every test you mentioned.

Okay, so I will take the Iron with orange juice, I just can’t stomach more pills. But, actually I am vomiting pretty soon after taking the iron tabs (210mg, twice per day) so I need to take liquid iron instead so atleast it is staying in my body.

I was very concerned I only got given 25iu of the Vitamin D, as I was previously given a super high dose which you only take once a week for 6 weeks - it was something like 20,000iu.

I am worried if I do get an Endo referral it won’t be until my pregnancy is over that I get to see someone. Sorry, if I contact Dionne will it not be under the NHS - or, am I able to choose my NHS Endo depending on their availability in my area?

Thank you so much Slow Dragon x

[Mk141209 in reply to Mk141209]

And I will definitely ask for a Coeliac test, if not I’ll go private.

I am just worried if the dr says no to all the tests, I will still go private - but then where do i go from there? Will the GP even acknowledge the results?! I just cannot afford private treatment with another child on the way

[SlowDragon Ambassador in reply to Mk141209]

You can order very easy coeliac blood test online - it's like a pregnancy test....immediately shows positive or negative

Assuming negative you can immediately start gluten free diet

Vitamin D - suggest you buy the Better You mouth spray

Works far better for most of us Hashimoto's patients, as it is absorbed in mouth and avoids poor gut function

betteryou.com/dlux1000

Look at magnesium for skin absorption, bath flakes, or skin Crewe or spray

The list from Thyroid Uk is mix of NHS and private

NHS waiting time can be long

Roughly where in the Uk are you?

[Mk141209 in reply to SlowDragon]

Okay thank you.

I am in Doncaster, South Yorkshire

[SlowDragon Ambassador in reply to Mk141209]

Sorry, I don't know that area. See if there's anyone on the list from Dionne

[Mk141209 in reply to SlowDragon]

I will do SD. I am honestly so so grateful for all the advice you have kindly offered. Take care x

[AnnaSo]

Hi MK,

I am pregnant with Hashinotos and happy to help.

Your TSH is waaaaay to high! As Slow Dragon advised it should be below 2.5. Don’t take your GPs ill advise and see another professional ASAP who will increase your meds.

What dose are you on?

[Mk141209 in reply to AnnaSo]

Hi Annaso,

Omg congratulations!!! Is it your first? How far along are you?

I was on 200mcg but they said the results are fine which upset me so much so the past 2 nights i took 300mcg levo. But i think i will cut a tablet up and take 250mcg instead. X

[AnnaSo in reply to Mk141209]

Thank you ☺️ yes, it will be our first - we are so excited 🤗 I’m nearly in week 18.

You should fire your GP, you’re results are far from ‘fine’! They are way over the standard range (0.35-4.95) let alone the pregnancy range which is lower (0.35-2.5). Ridiculous he dares to say you’re fine- he’s endangering you and your baby.

Great that you decided to do something about it yourself- you certainly need a higher dose (majority of pregnant ladies do). However you went a bit too high too soon. We should increase by Max. 25. You will certainly need more than 225 but you cannot do I in one go overnight, it’s too much for our bodies to handle.

Please please find a better GP who at least understands ranges so that you can get higher dose prescribed.

I manage my thyroid myself. I got poor advice over the last 10 years which meant I never felt even 80% human. But the final straw was endo advise thanks to which ended up at A&E and went through health hell majority of 2018, including putting over 30kg on. So I came here, I educated myself and I’m doing great now. I am on NDT.

[Mk141209 in reply to AnnaSo]

Aww 18 weeks so you’re almost at the halfway point! Although I had my first at 42 weeks 😩 good luck with everything though!

So I will just continue with 200mcg as per usual not 300mcg! I am going to try my best to see someone tomorrow and if I can’t then I will definitely be speaking with the Practice Manager. Having read about people’s experiences it really upsets me what we’re all going through. Like with yourself, 10 years is just mind blowing to not be feeling well and the symptoms can be so debilitating. I am just scared about self medicating, do you arrange private blood tests then to see how you are getting on with NDT?

[AnnaSo in reply to Mk141209]

Yes, absolutely, see someone as soon as possible. Hopefully the other GP will at least know the range for pregnant women!

I live in Australia at the moment and eventually found a GP who prescribed me NDT (compounded exists here, however not very popular at all, I literally begged) but I still buy and take one from Thailand as feel better on it. Also I am the one deciding on dosing. He’s happy that I’m doing well so I stick with him. He orders me bloods tests and since all is within ranges and looking good no issues there for him or me. Having said that, when I fell pregnant I went to an endo, you know, just to be sure things are ok on the thyroid side. I paid $340 for absolutely useless advice - to lower me dose (typical!). I currently take 3 1/4 grains and she told me to lower to 2 grains! Insane! That would probably send me straight to A&E again, not to mention danger to the baby. Needless to say, it just reinforced my belief to not even bother with doctors. It’s as if they want to keep us ill, their lack of knowledge is just obscene. They play with peoples lives, I literally lost entire 2018 because of bad advice, I won’t let that happen again.

[Mk141209 in reply to AnnaSo]

Oh my god that is so shocking!!

I am happy you have found a way to keep your levels healthy. I have read some horrific stories about doctors and endo’s! Is it any wonder so many have to take their health into their own hands.

Thank you sooo much Anna for all your help and best of luck with the rest of the pregnancy! X

[AnnaSo in reply to Mk141209]

Good luck to you too!😊