"Well what do I know, I'm just the endocrinologist and you are just the patient".

[Rhsana]

I was sent to a 'special' endo by my GP to oversee my thyroid during pregnancy and I was basically told that if I didn't switch back to levo, any miscarriage that may come would be because of that. When I asked him why he was overly concerned with my TSH being suppressed when I was on T3 only therapy his verbatim answer was; "Well what do I know, I'm just the endocrinologist and you are just the patient".

[greygoose]

I take it he was being sarcastic. Cretin. That's no way to answer a genuine question. I suppose he just didn't have an answer!

[Rhsana in reply to greygoose]

Yes he was. I told him not to patronise me, I had had enough of that over the past year and that if I was going to trust someone to see me and my baby through this then I would at least expect to have my questions answered. He did eventually apologise. It took a raised voice and some swearing on my part though. I was livid.

[greygoose in reply to Rhsana]

Well, you would be! Well done you, for standing up to him! I hope he learnt a lesson.

[UrsaP in reply to Rhsana]

Well good on you girl...well done! I hope you taped it!

[Hidden]

Would he say that to a man? Usual casual sexism, they hate being questioned by a woman.

[Clutter]

Rhsana,

How far up himself is he? Did you ask him what he thought about doctor/patient partnerships and shared decision making?

Most UK endos will want you to revert to Levothyroxine during pregnancy because there doesn't appear to be research into pregnancy while on T4+T3 or T3 only. I can't see why suppressed TSH is an issue but lack of FT4 may be.

[Rhsana in reply to Clutter]

Hey Clutter ,

Indeed! I wish I was collected enough to put that question forward, I will have to see him after the blood tests so I will be armed with that one next time, thank you! He is against T3 therapy in general, he didn't make any specific reference to my pregnancy except as stated above. He didn't mention T4 being necessary, only that T3 was dangerous. I have though looked into T3 only pregnancy as I had read statements of T4 being necessary for foetal development but weighing it all up have decided to stick to T3 and hope that we are both ok through the pregnancy. R xx

[Clutter in reply to Rhsana]

Rhsana,

He shouldn't use his prejudice about T3 to alarm patients. There have been 2 long term studies into the safety of Liothyronine but they don't cover pregnancy.

healthunlocked.com/thyroidu...

thyroiduk.org.uk/tuk/resear...

[Rhsana in reply to Clutter]

Thanks for these links, I will be sure to bring them with me next time! R xx

[UrsaP in reply to Rhsana]

Why are they so negative towards t3?

Like a red rag to a bull!

There is also the possibility that if you do stop t3, they may well refuse you it afterwards...in the current climate!

I'm on t3 only. Just been to Chemist too see if prescription through, he said surprised I'm still getting it. Told him no other alternative - can't take t4, but waiting for battle to commence...

[Itsnotinmyhead in reply to UrsaP]

Hi new here,

How do you know you czar take T4? Are there specific symptoms

I am still learning

I switched to dessicated thyroid and slow release and my anti bodies have come down.

Starting low dose naltrexone for Hashimotos today

I'm praying it helps

[UrsaP in reply to Itsnotinmyhead]

Hi Itsnotinmyhead , great name by the way! Apt...bet most of us have been there!

I do not even know if I was ever tested for Hashi's but suspect that is cause of my HypoT. Even specialist I saw when 19 (Now 55) tested over 2 yr period, said was, wasn't something throughout the 2 yrs....but never mentioned Hashi's??? What did I know at 19....never heard of thyroid never mind HypoT or Hashi's!

I waited another decade to be diagnosed with HypoT. I was then put on t4 for over 20 years.

I tried for all of those 20 years to get some benefit, doses were altered up and down, but symptoms persisted, worsened as many more developed, becoming increasingly debilitating until I ended up giving up my job. Very long story, very similar in many ways, to most of people on here. We are on here because we could not get the right treatment through GP's/Endo's etc.

After this 30 yrs of substandard treatment, now suffering with CF, debilitating Fibro and migraines amongst others, I asked GP to be allowed to try something else. I was told there was nothing. I 'reminded' him there was T3. He couldn't prescribe. So said send me to someone who can. Several months and an ineffective non-endo specialist later, I did get to an Endo, got a little t3 along with reduced t4 (At this point adrenals were recognised as 'borderline', retested and deemed to be ok) Improved for a while to a limited extent. But better than had been forever. But got swine flu - back downhill and fast. (Hindsight probably because adrenals could not cope with illness, couldn't 'recover)

Endo sent me to 'Quack'. Who thankfully agreed was chemical/medical not a mental issue.

Did not go back to Endo - had lost faith. Went instead to see Dr P - lifesaver! Explained that due to longterm problems, looked like, from blood tests, t4 not converting, hence blood was becoming toxic, hence symptoms,probably because low adrenal function inhibiting uptake and useage, but because this was 30+ years down line, likely that the enzyme that converts t4 to t3 may not restart.

Told me to stop all meds for a number of days, then start on adrenal support slowly, advised to continue with t3. Slow build up of support along with t3, introducing t4 slowly to see if enzyme would kick in. Tried several times over about a year to reintroduce t4 - When stopped t4 -all fibro/migraine disappeared within days. When reintroduced would come back quicker. Over c another year, found the right balance for adrenals support/ Nutri thyroid, other Vitamins and such, along with t3 only. I was lucky, GP, having referred me, I did tell him I was seeing Dr P, as nothing else had worked, asked for his support, he agreed, and he did give me the space to work with Dr P to find the right balance. It worked. Once meds settled my life was just so different. I had a life. For the first time I realised just how badly my life had been impacted on, by this condition and the poor treatment. I have had a couple of occasions where things have gone a bit haywire, and can take a few months to get back on track - notably following high stress situations. (Adrenal incapacity to cope) But t3 has been a lifesaver.

How anyone can say it is 'low value' and 'low benefit'! Madness!

There are so many things on here that I have never heard of, and get confused as to what it is - naltrexone? Is that a brand name?

I wish you all the best and good health. I hope you find what works for you. Hopefully better informed bods on here will be able to assist and advise.

[UrsaP]

Well...how very dare you!!!?? Asking a question of a Dr?

I think the answer to his own questions was 'seemingly nothing!' What an ar**!!!

I hate hearing about these so called specialist who seem to hold themselves up on pedestals expecting patient to bow down and hang onto their every word! Pompous T***! Excuse my french as they say!

Can you change your Endo - tell him he is not worthy to treat you. How dare he try to scare you so! I went through two pregnancies, one undiagnosed though had a problem for over a decade and had seen another pompous 'Specialist' who dismissed me with no treatment, (could have caused me problems with my first pregnancy) The second I was on t3, but had no input from anyone regarding the condition. No one ever referred to it. It was after that I found out the possible issues with thyroid and pregnancy.

All the best.

[Rhsana in reply to UrsaP]

Well said! I will see what the climate is like when we get the bloods back, but I have been working with a private doctor as well so if need be I will lean on him for all thyroid related things from here on in. I am so sorry to hear about your own experience, being in the first trimester and having to deal with all that comes with the pregnancy alone, let alone what that means for us hypos - and without even knowing you were must have been really really tough! I have decided to stay on T3 only during this pregnancy. Though all the advice has been to up the dose so I am almost on double what I was, we shall see what the bloods say- with regards symptoms - I really can't tell as I don't know if it's just 'normal' pregnancy stuff or being hypothyroid on top of it as well - but I do know I am shattered all the time and the nausea is relentless! Aside from that my low progesterone has been cured with all these pregnancy hormones so that's a bonus R xxx

[UrsaP in reply to Rhsana]

Aw bless, that is the trouble, we never know what to expect in pregnancy, every time can be different. Actually for me the first time (26/7 yrs ago now!) I probably felt better than normal - I lost weight? And remember being fine most of it - only one brief dose of nausea, v early on. But think the pregnancy took more out of me and afterwards struggled. As many do, and it is often after a pregnancy that Hypo is discovered/diagnosed. It must deplete reserves. Second time around - very different as noticed fatigue more and the weight gain!!! Groan! But worth it!

Look after yourself, relax, and enjoy your remaining months of peace. And Just think, if you need to, you can have a right go at any obnoxious medics, tell them straight and then blame it on your hormones, and hopefully get away with it! Ha ha...something ironic about that.

Best of luck!

[silverfox7]

I would ask your midwife if she has any experience and she may be able to say who to talk to about it.

[Rhsana in reply to silverfox7]

silverfox7 , indeed- I initially sought to go that route, she is a lovely lady and very caring and at least honest! She said she didn't know much about the thyroid only that most of her patients will raise their levo while they are pregnant. She also didn't know the difference between folate and folic acid or what other supplements I should still be taking while pregnant, so I thought I would have to see someone who I could talk to about that as well, though I got nothing on that front from the endo either. R xx

[silverfox7 in reply to Rhsana]

What a pity. I had my chhildren before I had a problem so firsthand experience. But I've seen threads with excellant midwifes.

If no ones comes in with advices for your query I would repost with a more eye catching headline. I know where I am tired or haven't much time I skim through the ones I think will interest me so maybe something about help needed for pregnancy on T3 only. That should catch the eye more of others who have been in the same boat.

Good luck!

[Rhsana in reply to silverfox7]

Thank for the tip silverfox ! I wasn't really seeking advice on this thread, just venting my frustration, as I know many others have had a similar experience. R xx

[nightingale-56 in reply to silverfox7]

silverfox7 my Midwife was the one to tell me that if you had a Mum who had thyroid problems then you usually had a baby with growth problems.

[Hidden]

So sorry you are going through this. They are a nightmare to deal with and I got quite poorly as soon as the NHS got involved during my pregnancy. I have great sympathy having just on Tuesday had my baby girl and self medicating all the way through. I would say just go along with what they say nod but they have no control over what you choose to take so if you want your t3 levels to remain good just carry on taking t3 obviously closely monitor your own levels so you don't go over. My baby has to have a thyroid blood test in a few weeks, (not the heel prick one)not looking forward to that. Don't let them bully you, they will try at every opportunity. They tried telling me that my levels were too high and would cause miscarriage. Got me to reduce my NDT at 17 weeks and then within days I started spotting so I upped it a bit more and just didn't tell them and the spotting stopped. I had 7 miscarriages previously so with me it was low thyroid levels causing it and not my t3 levels being top range. My TSH remained suppressed all the way through and I even had one tell me I had to stop taking all medication for this to rise to normal levels! That most definitely would have caused miscarriage or stillbirth. Go with your gut instinct as they do not always know what is best at all x

[Rhsana in reply to Hidden]

Hi Hidden ,

Congratulations!!! I am so so happy to hear that you and baby girl are ok You must be exhausted! Hearing about your experience makes me angry, I am sorry you had to go through that, I fear mine has been similar in the early days, hopefully with your advice and the other advice on here, I can still have a healthy pregnancy. I had managed to stop the weight gain, not reverse it yet but at least put it on hold before the pregnancy - now not so much! They have warned me about gestational diabetes so I am trying to be cautious but all I can eat at the moment is fruit and carbs! Not so great! I had some bleeding and pains a few weeks ago- the scan showed a healthy heartbeat for baby - but I am still very very anxious and I hope that the consistent nausea is a good sign! I am so very happy to hear you have your baby girl. xxxxxx

[Hidden in reply to Rhsana]

Hi, thanks so much. She is absolutely beautiful and an amazing placid baby. Stay strong and keep posting on here. These people do try and grind you down but you probably know a lot more than they give you credit for, especially from the great people who advise on here. Without them I wouldn't have even been able to carry in the first place. They scare you to death(the NHS) but that's the tactic they use to get you to back down. They kept saying to me about miscarriage all the time. Even if you do get gestational diabetes there's loads of good info out there and the NHS diet is probably the worst to follow. They told me she was going to be huge based on growth scans and was over top of the range for her weeks gestation. She was born at 38 weeks and 1 day and weighed 7lb2 so not big at all!! I am still very sore after the op, they discharged me the next day but believe me it's all so worth it. Deal with one thing at a time and see every appointment you get through as a step closer. It's easier said than done but try not to let them scare you so much. Buy t3 if you have to and don't convert well, as long as your levels are within range they cannot make you do anything Xx

[Rhsana in reply to Hidden]

Thank you Hidden <3, get some rest as well hugs to you and you're beautiful baby girl xxxx

[Glynisrose]

Just explain you are the specialist when it comes to your body! If the doctor measures by TSH run away! Sack him and get another!

[Angel_of_the_North]

Never a truer word ...

[silverfox7]

I had my children before I started with a thyroid problem but I was sick at each pregnancy and got worse with each one but I was told sickness is a good sign though I certainly didn't think so at the time! Hope everything goes well for you and your little one.