THS suppressed at 3.09

[Pixielula]

So.... my daughter had an appointment yesterday with her doctor to see about getting a med increase she started getting some hypo symptoms back over the summer had her bloods done three months ago THS 3.09 (0.30-4.40) so the doctor (and I'm using that term very loosely now) told her that her THS is suppressed!!!!!!!!! and they should be reducing her meds not increasing them, I am so sick of this are there any doctors out there that know what they are doing.....

[marram]

Suppressed? 3.09? For me to reach 3.09, would not only be a miracle, but I was bedridden and unable to walk with a TSH of 1.4! If my TSH ever reached 3,09 I would probably be dead.

I really do feel for you, the whole thyroid experience is so frustrating. And, to be honest, even endocrinologists mostly specialise in diabetes, and have only the basic understanding of thyroid disorder.

You might find the book Understanding Thyroid Disorders by Dr Toft helpful, though in later editions he has modified his point of view - probably under pressure to fall in line with everybody else, since that seems to be the way the Thyroid Mafia works.

I certainly would not accept this gp's judgement that a TSH of 3.09 Is suppressed. The health of your daughter is too important.

[Pixielula in reply to marram]

I just don't know what to do.... part of me wants to drive up to Cardiff and beat her GP senseless. I know my daughter is beginning to struggle, she knows she is beginning to struggle and is currently exercising like a maniac to get the weight off that has started to creep on, making her more exhausted. She is only 22 so has a long life of struggle ahead, I want to scream !!!!

[marram in reply to Pixielula]

As you probably know, exercising like mad will, long term, make matters worse. Every time she drives herself that little bit past her tolerance, she depletes her available T3, which will make conversion more difficult. It becomes a spiral of despair, because clearly she is undermedicated.

You both know that her weight gain is not due to lack of exercise, but lack of medication. I would like to take that trip to Cardiff, too, and give you a hand beating her GP senseless.

[marram in reply to marram]

I have been trying to find what medication and dosage your daughter is on, but cannot see a post re your daughter, though it is abundantly clear that, as a family, autoimmune disorders seem to have hit all of you. It must be very distressing to see one after another suffering, when, oh, when will we have some fruitful and positive research into autoimmune disease! Apparently now they are thinking that some forms of mental illness may be autoimmune...I have been sure of that for years.

But for your daughter right now, what us she Taking at present?

[Pixielula in reply to marram]

75mcg levothyroxine....

[marram in reply to Pixielula]

That is not a particularly high dose, then. And, being on T4only, she will be very much affected by anything which might hinder conversion. Has she had all her vits and minerals checked? Esp iron, folate, ferritin.

[Pixielula in reply to marram]

She was diagnosed 5 years ago, and has had 2 dose increases since, she hasn't ever had vits done but has had anaemia before dr gave her iron tablets, she is a veggie and eats loads of gluten 😟

[dang in reply to marram]

Marram Great comment! Just wanted to add weight loss also requires a good diet, I lost 50 lbs in 10 months while under medicated from diet alone, I made sure to never do anything more than "light" exercise during this time.

[Clutter]

Pixielula,

Your daughter should tell her GP that a suppressed TSH is <0.1. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your daughter's GP.

Perhaps your daughter could see another GP, hopefully someone more clued up.

[Pixielula in reply to Clutter]

This is the second one in her practice the first one offered her anti depressants!!! No shocker there.... I'm wondering if I should ring the surgery and suggest they go back to medical school, why is it harder to watch your children struggle than it is to go through your own struggle. Her surgery only does THS no T4 or T3 maybe I should do a private test when she is home in a few weeks...

[Clutter in reply to Pixielula]

Pixielula,

She doesn't need further testing, TSH is almost top of the range because FT4 and FT3 are low. She needs a dose increase. Perhaps she could show one of the GPs the link I posted?

[Pixielula]

I have just emails it to her.... they did re test yesterday luckily she hadn't taken her meds as she had run out but she did have breakfast .....

[shaws Administrator in reply to Pixielula]

Taking food can also reduce TSH so may not be accurate.

verywell.com/optimum-time-a...

[Sybilla14]

Hi Pixielula, if your daughter does not get anywhere with the GPs, I'd change surgeries. Some people have decent experiences, they're not equally uneducated about thyroid disorders.

My endo, although specialising in diabetes, was very knowledgable about the thyroid (I only know as I've spent years reasearching myself whilst fighting to get diagnosed and treated). He wrote in his letter to my gp that the target tsh is to be between 0.5 and 1. The two GPs I saw since accepted this (although I had to remind the last one after he said "you're in range now" to my tsh of 4!!) and they have been increasing my dose so far.

Sounds like your daughter is in Cardiff, so there should be a choice of gp surgeries for her?

[Sausage_Dog]

I'm going through the same thing. My TSH is 3.16 and my endo is going to write to my GP to recommend a dose reduction. I still have symptoms. I don't understand why they are doing this. I'm going to write a letter to my GP. I have the Pulse article from Louise at Thyroid UK where it says patients usually feel better with TSH below 1. I have also printed out the list of symptoms from Thyroid UK and going to highlight all I have.

I wish you good luck with your daughter's GP xxx

[shaws Administrator in reply to Sausage_Dog]

No - what is going on with these doctors - to reduce your dose as your TSH is 3.16. I wonder if they are deranged or have fallen asleep while their 30 minute's training on dysfunction of the thyroid gland was mentioned.

[Pixielula]

I have just spoken to her and she is going to ring the doctors and ask for an endo appointment .... I could understand her GP saying your labs are in range but to say her THS is suppressed is woefully ignorant of thyroid issues....

[shaws Administrator]

OMG - how are doctors remaining so untrained about, if hypo, what our TSH should be around if on levothyroxine or any other thyroid hormones.

Two links which may be helpful.

thyroiduk.org.uk/tuk/testin...

web.archive.org/web/2010112...

The doctor obviously believes that if the TSH is below the 'top' of the range the patient has a 'suppressed' TSH.

[spongecat]

Absolutely incredible. Your poor daughter.

We really are sitting on a ticking timebomb here. No doctor is forced (so to speak) to go to symposiums. They may not even read on latest research of new trends in diseases and their treatment, that is even if research makes to publications like The Lancet or Pulse etc..

I also read somewhere that with some conditions it can take up to 17 years.....17 years! before some recommendations can filter down to day-to-day general practice. That is after the subject has been debated and deemed "acceptable" by the various internal governing bodies and enclaves like NICE.

[Pixielula]

It's so frustrating.... I can spot when she starts to slide and I will casually say " when did you last have your thyroid checked?" She will get her bloods done and has always needed a dose increase, she is losing hair her skins is dry weight is going on she keeps getting mysterious viral feelings, (aches and scratchy throat ect) and she goes from upbeat sunny and vivacious to sluggish dark and dispondent... god it breaks my heart

[Rapunzel]

(((Pixie))) really feel for you. Whatever ill is happening to those we love we'd much rather bear ourselves. Get her a Blue Horizon blood test for Christmas; the best present you could buy her together with a woman to woman chat. Explain a little of what you've been through to reach where you are and that you don't want her suffering the same nonsense.

She must find a more clued up GP, the tool who saw her yesterday will rob the very life from her - what an ignoramus buffoon. Doctor knows best my big fat @rse. Unutterable kn*b. I'd be so affronted in your moccasins. Don't let the stress of this affect your wellbeing - you need to be strong to deal with her mistreatment xx

[Katepots]

Hi, just found this post. Really hoping your daughter has had some joy in getting an endo appointment.

Has she had her thyroid antibodies checked? Really need to know if she has Hashimotos. Then no amount of exercise will get rid of the weight unless she goes gluten free. Vit D, B12, Folate,feretin etc??

Look at the private testing on bluehorizonmedicals Thyroid plus eleven, twelve or fifteen will give you a better picture. She can then take results to a GP or better still an endo.

Without a doubt she'll need to be taking B12 because of her diet. Iron and vitamin D also likely to be low. All will be making her feel terrible.

I feel shocking with a TSH of 3, she's definitely undermedicated. Have you thought of getting some T3 privately to add? Although she may well just do better with a blooming increase of meds. So sorry that GP is such a moron. So difficult when your children are away.

I'll also join in with the posse going to Cardiff to batter the GP!!

[dang]

Wow find another doctor don't waste your time with someone who doesn't know what they're talking about. I'm really sorry for your circumstance, a doctor who doesn't even understand the definition of suppressed...