Urgent help after worrying pregnancy endocrine appointment

[Debs11]

Hi my daughter is 13 weeks pregnant with her first baby & following RAI treatment 5 years ago for graves disease she has for the past 2 years been taking 3 grains of Erfa daily. She has done much better than on levothyroxine which made her symptoms worse & her bloods not in range with high tsh & low T4.

The gp & midwife were all told about her erfa & she was told to not change her dose as her tsh is suppressed & they are more. Concerned if tsh is high.

Today she had consultant appointment with the hospital pregnancy endo who told her she had probably brain damaged her baby taking an unlicensed drug & to Change to levothyroxine immediately. When we challenged her by saying surely it was more of a risk taking a drug that we knew didn't converted to T3 for hollie & would that mean the baby would also be depleted she wouldnt answer. when I said we get it from a chemist with a prescription from a private gp she said "its not meant for humans its for pigs" you have taken a terrible risk on your unborn babies life........

Her 12 week scan went well & the baby was the right size for her dates, she is due her next scan in 6 weeks where they will do an antibody blood test on the baby to see if it has antibodies & if it doesn't she will be discharged from endocrine care & if it does have antibodies she will continue to be monitored in case it isn't growing properly.

Sorry for the rant but just can't believe her attitude, any reassurance or advice greatly received.......!

She also contradicted herself by saying that by now the baby will start to make its own thyroid hormones when before she said it was wholely reliant on hollie providing it. Hollie is reluctant to change things now but has had a nasty shock...

The first doctor the obsteratrician listened to babies heart & couldn't have been more reassuring.....

[HarryE]

Oh the poor thing, what a load of twaddle! Wishing her the very best x

[shaws]

The doctor concerned is ignorant. It's as if we use 'black magic' to dose with.Considering NDT has been in use for more than 100 years with satisfactory results

Why would you try to frighten someone who is newly pregnant, doing well on her NDT treatment to say that she has probably harmed her baby. NDT is more synergistic with the human body than a synthetic.

I wish your daughter well in her pregnancy and she has a good obstetrician.

[Debs11 in reply to shaws]

Thanks Shaws, she behaved like we had been grinding up our own pigs thyroid, she was horrified!!!

[HarryE in reply to Debs11]

& so what if you were? That's how people used to be treated! I believe you can still buy sweetbreads? They aren't illegal. Stupid doctors!

[Fruitandnutcase in reply to HarryE]

Something makes me think that I read somewhere that the first people treated with a pig thyroid (back before it was desiccated) were given a sandwich containing ground up raw thyroid to eat - I gather the patients weren't wild about their cure.

[HarryE in reply to Fruitandnutcase]

Yes, it's in Dr P's book.

[Debs11 in reply to HarryE]

Yum, bit like a faggot sandwich, thanks for cheering us up when we left the hospital we were wrecked...... x

[Fruitandnutcase in reply to Debs11]

I can imagine. Wrecked probably doesn't even come close to how you were feeling. Stick with your GP, midwife and obstetrician - that's three against one

[linda96 in reply to Fruitandnutcase]

I read the paper yesterday where George Redmayne Murray in his paper regarding the first patient said he injected the pig thyroid into the patients back, into a bit of loose skin.

[helvella in reply to HarryE]

Sweetbreads are not usually thyroid glands but thymus, possibly pancreas or parotids or even some other glands. (I am no expert, but this has come up quite a few times so I have checked it out repeatedly.)

There are well-documented cases of thyroid glands being left in meat and causing excess thyroid hormone - sometimes called hamburger thyrotoxicosis. Very often reports are about home-killed, or at least home-butchered meat.

I suggest that selling thyroid glands for human or animal consumptions might actually be illegal - but I would be happy if someone can post chapter and verse on this either way.

Rod

[humanbean]

This just proves it. There are sadists everywhere and the medical profession seems to have a remarkably high number of them.

Just remember that natural dessicated thyroid has been used successfully since the late 19th century when it was first developed. It isn't licensed because it was considered to be so safe that, when licensing became a requirement for drugs, NDT was exempted from the need to get a license. If there had been masses of babies born with problems as a result of NDT then I think someone would have noticed a long time ago.

The medical profession aren't taught about NDT, so this doctor was passing on gossip and rumour, probably created in the first place by pharmaceutical companies who wanted to sell levothyroxine.

[shaws]

This is a link which may be helpful, read after the first question:-

web.archive.org/web/2010103...

[Debs11]

Thank you for your responses, we were so in a state of shock. We didn't know we would be seeing the endo today so hollie had taken her erfa 2 hours before the appt, the Dr did bloods & we had to wait for the results, I explained that they would appear elevated due to the timescale involved & that all hollies other results are taken first thing in the morning & without taking her erfa but she just rolled her eyes at us & did the test anyway......!

She was so rude & harsh, when she said there is no evidence that babies are safe when their mothers are taking ndt I asked what evidence she had of risk but she just ignored that.

Hollie is staying on the erfa because we have done our research, pity the consultant can't say the same thing x x

[foreversummer]

How disgusting for a doctor to behave in this way and worry a young mum-to-be unnecessarily. She should be ashamed of herself. I don't know what she thought happened before levo was introduced. I wish your daughter all the very best for a happy and healthy pregnancy and baby.

.

[Debs11 in reply to foreversummer]

Thank you it was very upsetting, when she wrote the prescription for the levo she said "take it from now on although the damage is probably already done by now" She was vile......!

[Fruitandnutcase in reply to Debs11]

That is just an appalling, insensitive thing to say to any pregnant lady. Just awful. I'm quite sure as the others have said that if there had been the slightest problem with it in the many years when it was the only treatment around then it would have been noticed. I hope Hollie can put everything that was said behind her and enjoy her pregnancy and her baby.

[Debs11 in reply to Fruitandnutcase]

Thank you, felt very lucky to have everyone on here to turn to....

[Fruitandnutcase in reply to Debs11]

I know, this group is so good isn't it. You must have been absolutely devastated when she said what she did. Just don't even think about it from now on. Horrible woman that she is, fingers crossed you won't have to see her again.

[helvella]

I find it very difficult to understand how establishment medicine seems perfectly happy for us to take levothyroxine and, sometimes, liothyronine and eat pretty much any part of the pig - bacon, sausages, brawn, cheek, ribs, ...

But if the meat happens to come from the thyroid, then it suddenly becomes worse than not good, it is treated as an evil.

Now it is very important that in recent years desiccated thyroid (at least from north America) is well controlled and regulated and is pretty consistent. In years past, there were undoubtedly questions over potency and consistency. Mind, I suspect that many people adjusted their doses to compensate so perhaps the effective hormone dosing was not that erratic?

[Debs11 in reply to helvella]

I really think she would have been more gentle with hollie if she had said she took heroine or drank heavily, it was really unbelievable how angry she became & how much she believed the baby was damaged & yet could show me no evidence to support this.

[puncturedbicycle]

I'm sorry - I'm sure you have enough on your plate already so disregard if not appropriate - but this doctor wants reporting. How on earth can it be considered professional behaviour to frighten the life out of someone with absolutely zero proof that what they're saying has any basis in logic? I would hope that any doctor who genuinely believes that a person is endangering their pregnancy would explain their point in a reasonable way, and only if it was something that was known to do harm. Why would a doctor rant and rave in anger? It's unprofessional and counterproductive. How awful for you and your daughter.

[Debs11 in reply to puncturedbicycle]

My daughter is going to continue with her erfa & is seeing her midwife in 2 weeks so will ask if there is any point going back in 5 weeks to see this doctor for repeat bloods if she is not going to take the Levo. She is having the babies antibodies blood test at 20 wks & if no antibodies found she will be discharged from endo care antinataly, fingers crossed.....!

[puncturedbicycle in reply to Debs11]

Yes, everyone's fingers will be crossed for her!

[Debs11 in reply to puncturedbicycle]

Hi I have been to see hospital pals for advice & will be putting together my case. Our issue was not that she refused to advocate my daughters choice of treatment but her unprofessional & rude manner & her blatant disregard for the welfare of her patient & the baby, giving personal opinion that she could not back up with fact. When she mentioned the baby being damaged my daughter replied that her scan had been OK, she replied "well scans don't show everything"........ unbelievable really!

[Clutter]

Very unprofessional behaviour from the endonob. I hope Hollie complains. Why not go back for the blood tests which will indicate whether Hollie needs to increase her meds and see if the endo can tell whether Hollie is taking Erfa or Levo.

I hope Hollie enjoys the rest of her pregnancy.

There are a couple of informative links on hypothyroidism and pregnancy on this site hypothyroidmom.com

[behappy1]

I find that you have to do your own research and be your own advocate in these circs. My endo is useless and I don't have confidence in him. Trust your judgment on this. I wish your daughter a happy, healthy pregnancy x

[Debs11]

Hi just a quick message to everyone who contributed to this thread, thanks for your imput, it saved my sanity......! I have composed a letter to take with us to the consultant appt in 2 weeks time outlining our reasons for not taking her advice, as I don't think I could explain it calmly in the 6 minute appointment slot. If any of you would like to read it I'm happy to pm it to you. I don't want to post it as theres some personal stuff in there but for those who have been involved feel free to use any of the facts or bits of research included for your own use. Thanks again for all your responses. I don't know what we would do without this site....

Thanks Debs

[linda96 in reply to Debs11]

Erfa thyroid is far nearer to our own thyroid secretions then ever levothyroxine would be. And on that note every thyroid-normal mother has t3 and t4 swishing around without Drs going round making these mothers stop the t3 being produced.

At 12 weeks your new grandchild will be producing his or her own thyroid, and at this point your daughter needs the t3 to keep up with the demands on her body with enough t3 from the Erfa.

From 2nd trimester your daughter’s TSH should be under 3.

[susymac]

Thats disgusting, she had absolutely no right to use scare tactics and I hope you report her! Erfa IS licenced, just not in this country. The baby is far better off with a well treated mother than an undertreated mother.

Change endo if you can.

[Debs11 in reply to susymac]

If the baby's antibodies come back clear we will be discharged from her care so fingers crossed we find out in about 5 weeks x

[Debs11]

Hello to all you lovely people who posted on this thread. Just a quick update. My daughter delivered a beautiful healthy 8lb 8oz little boy in August. His thyroid function came back normal & he is now nearly 3 months old & is a very content, happy breast fed baby. Thanks to Gordon skinner (rip) without whose help I'm convinced she would never have got well enough to conceive in the first place. She is continuing on her erfa & is absolutely loving being a mum. Never lose the faith, after all the worry caused by the consultant here he is, still can't quite believe it! so happy that we kept the faith & stuck to our guns about staying on the erfa...... thanks again to the community you all helped us stay brave! X x x

[humanbean in reply to Debs11]

Fabulous news! Congrats to you and your daughter and all the family.

[Bex0991 in reply to Debs11]

Hi Debs11 , I know you posted this many years ago but I just wanted to reach out as I’m in a similar position to your daughter but struggling to find answers online regarding taking solely Erfa and currently trying to conceive.

I too was helped by Dr Skinner almost 15 years ago after feeling dreadful on levothyroxine and have been only taking Erfa ever since.

Now that I’m trying to conceive (have been for nearly 2 years now) I’m finding that my GP doesn’t really want to get involved in helping due to me not taking levothyroxine.

Your daughter’s story is also one of the very few I’ve found which actually proves that you can have a healthy baby and mum whilst only taking Erfa.

Not sure if there’s a private message function on this but it would be great to talk further especially if your daughter also has an account as I would be interested in knowing who her private endocrinologist is since Dr Skinner passed.

Hopefully speak soon and thank you in advance!