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Just diagnosed with Hypothyroidism -any advice/ private consultant recs?

(28 Posts)
tootsroots Tue 19-Apr-16 10:49:38

Hi

So just back from GP - wonderful Jr Dr diagnosed me and saw through my postpartum lack of sleep as have a 6 month old and those issues and ran some bloods... TSH -whopping 103 and T4 a measly 2. He said he has never seen this extreme.. but he is but young smile.

I have private HC, so looking for a consultant in Parkside /South London or the City an Endincrinolgist?

Also on 50 mg of the Levothyroxine daily... do people find they work?

I am a bit shocked and clueless!!! But hopeful i will be better soon!

HarrysMummy17 Tue 19-Apr-16 11:10:53

I've been on levothyroxine for about 10 years now. I was originally diagnosed with depression but anti depressants didn't help.

I was finally diagnosed with an under active thyroid.

My medication has risen gradually over the years and I'm currently on 200mcg as I'm pregnant so it's been increased.

I've found the medication has helped. I moved house a few years ago and didn't registered with a doctor straight away so ran out of the meds. I had mood swings, I was shattered and emotional! It got better again once I was back on the medication!

Pleasemrstweedie Tue 19-Apr-16 13:51:21

At those levels he could have started you on 100mcg. Make sure you go back at 6 weeks for a re-test and more medication. Most people are fine with thyroxine, provided they are able to get enough. You should be aiming for a TSH around 1 and FT4 and FT3 towards the tops of their reference ranges.

Lots of information on the ThyroidUK website.

clarella Tue 19-Apr-16 13:54:40

Wow! That's a huge Tsh!

You will need to be monitored over the next few months to finely tune your dose, and over the next year and then once a year OR if you start feeling unwell again.

It's VERY important to have Tsh below 2 and thyroxine raised in first trimester if you have another baby,

Please find out more about your condition; understanding it does help you manage it. I've had it for 20 years (got it quite young) when it's well managed in very well, very fit, lots of sports etc. When not well managed it's awful.

It's a chronic condition for life. Your body is slowly destroying your thyroid and will not be able to make its own thyroxine, hence the replacement hormone. If I didn't take it now I would die - it would take a few months though! I often thing it's like diabetes type 1 in slow very motion. And like diabetes you're entitled to free prescriptions now.

T4 (thyroxine) has a half life of of 10 days so it takes a while to build up in your system (and get out if you stop/ reduce doses) - it's important to remember this.

With a Tsh of that I imagine you'll need a dose increase or two over the next few months, following blood tests of course. You're aiming for Tsh of around 1 but everyone is different. Symptoms can take a while to ease properly - 2-6 weeks, sometimes longer.

The British thyroid foundation have been hugely helpful to me over the years. There's also quite a few medications that can affect thyroxine and vice versa, so always check with the pharmacist. This book lists them too and is EXTREMELY good actually - I'd definitely get it asap! It's by the BMA.

https://www.amazon.co.uk/gp/aw/d/1903474191?pc_redir=T1

You can feel better if ferritin levels are over 70, vit d good and b12 is good. - worth remembering if you still feel unwell.

Thyroid uk are another helpful website and healthunlocked are too.

tootsroots Tue 19-Apr-16 15:56:08

Thank you wonderful people for replying... GP was a bit shocked how i am coping on next to no sleep of a newborn plus feeling rotten... he didn't sleep more than an hour until last week at 6 months! ( sleep consultant Hannah Love has made me sane!!)I felt i had PND but then my appendix burst and was evicted last month so i though maybe that death with then i ought to seek help for potential PND given how rubbish i felt... i also had panic attacks over things - not me at all, and despite trying to walk everywhere and be healthy... my weight has crept and crept up to obese BMI even on calorie controlled diets, SW and body chef... and copious amounts of exercise and Breast feeding. I felt i was crawling through treacle. I am really a high energy talkative person so you wouldn't know how crap i felt if you knew me as i masked thinking i had to just cope.

He listened to me carefully and clocked this goitre thing i had thought iwas fat on my neck and got urgent bloods done ASAP after the appt on Friday and followed up today. Phew.

I am off on a 5 week holiday in June so want to see a consultant before that and the next St Georges appt endocrine Dr is in July so trying to find someone to see next week at Parkside to put an appt in ... i have private so might as well use it.

It does sound a little high even to the uninitiated... 103 vs a 2 target.... does it take long to lower TSH?

tootsroots Tue 19-Apr-16 15:56:54

Pleased to hear about you managing it for years though... i was clueless as i thought it was completely something else like diabetes! Did i do anything to get it i wonder?

thebunnies Tue 19-Apr-16 16:02:51

I see Prof Conway at the Claremont Clinic and he is really good. The best I have found in London. Treats symptoms rather than being bound by blood result ranges. Good luck, it can take a while to get the right meds for you.

justabigdisco Tue 19-Apr-16 16:04:25

Why do you need to see a consultant? Sounds like the gp has it in hand

tootsroots Tue 19-Apr-16 17:46:41

justabig He is a Jr dr and only there 4 months...and moves to his next rotation.. i asked what he would do.. and he said go see a consultant as the results were a little extreme and i have no consistent GP normally... and we are thinking of a new baby so need to ensure it is managed pre this... lots of reasons!

clarella Tue 19-Apr-16 19:01:49

Treacle is exactly thyroid symptom. It can also cause depressive and anxiety like symptoms - your brain is mud and your muscles weak so anyone is going to feel low. I used to get panic attacks too.

It's autoimmune, like type one diabetes and coeliac disease, pernicious anaemia etc. It's just part of your make up. Pregnancy often triggers it. I just developed it at 20, I had started the pill but I think some ups and downs had gone on for a couple of years.

You're probably aiming for Tsh 1 or just below to feel best. But most good gps SHOULD treat the person not the number now.

Keep records of your results and roughly how you feel.

I personally have felt very well on t4, I've never fluctuated by more than half a stone (I tend to loose weight when underactive). But some people do not and need some t3 and t4. That's hard to get on the NHS.

I've only been unwell on t4 when it's not the right dose, my iron is borderline (ferritin: 50, best over 70+) and I suspect low in vit d a while ago. All very easy to stay on top of, even easier with a good GP or private.

Sanibel09 Tue 19-Apr-16 21:51:19

WOW! That is a high TSH. Mine was 87. When I was diagnosed 7 years ago and my GP said it was the highest he'd ever seen. Took about a year for me to feel "normal" im now on 150mg. Unfortunately, ive just been diagnosed today with lymphoma, so am feeling shit again. No link with thyroid though. Hope you start to feel better soon

tootsroots Tue 19-Apr-16 22:25:33

san
am so sorry, cake hope you are getting the support you need for that.

Corabell Tue 19-Apr-16 22:36:11

My TSH was well over 100 when I was diagnosed 9 months post partum.

50mcg is a tiny starting dose. Expect to go up to at least 100mcg quite soon. You will find recovery relatively slow and you may feel worse before you get better. You need to get other things checked such as vitamin d, iron, ferretin and b12. When these are at an optimal level you will process levothyroxine better and have a little more energy too.

Health unlocked/ thyroid uk is a good place to start if you want to see a consultant privately. Some endos are very good but others less so. Thyroid patients often feel that they are not listened too and doctors don't pay enough attention to their symptoms and focus solely on blood results. A good endo can be hard to find!

Do you know if you have hashimoto's disease ( auto immune) ?

I was automatically referred to an NHS endo after my diagnosis because it was post partum. Can you ask to be referred?

tootsroots Tue 19-Apr-16 23:42:43

Have been referred due to the excessive levels but appt is end of July.... Don't think I am able to function much longer feeling this awful sad and dealing with a sleep thief baby.... I just want to hide under my duvet and hibernate ! Have private appt on Friday to move quickly but they are my first opinion as if were whilst I suss out what's what....

Thyroid U.K. Pack purchased !

tb Thu 21-Apr-16 19:10:45

Btw it's also possible to be unable to convert T4 (levothyroxine) to T3, although some specialists don't believe this is the case. I was given enough levothyroxine to sink a ship, but just kept feeling crap - and overweight at 134kg. Even 3 weeks in an obesity clinic didn't shift any weight.

I had a strop and stopped taking my medicine after my specialist said there was nothing more she could do. I then restarted just before an appointment, but after the blood test. Despite going from nothing to 175mcg thyroxine and 25mcg iodothyronine overnight I didn't suffer any palpitations etc. She was quite shocked by that. I thought I might have impaired conversion and did a trial swap myself and felt much better. She then let me try that for 3 months and after my blood tests were ok, let me continue on iodothyronine only, as it seems that I can't convert one hormone into another.

There are also people who are better on natural hormone, that was all that was available before synthetic hormones existed, and this contains T1, T2, T3, T4 and T5. It's available in the UK, but not in France.

clarella Fri 22-Apr-16 09:39:47

Tb I do think that condition is being increasingly recognised now, slowly. I have met professionals who have diagnosed it/ investigated it.

tootsroots Fri 22-Apr-16 17:03:28

Consultant was lovely. Doubled dose Immediately to 100mg plus vit d to be taken .... Hope this works soon!!

BombadierFritz Fri 22-Apr-16 17:10:29

Is it postpartum thyroiditis? It might resolve rather than be a lifetime condition. Hope the increase in meds helps flowers

clarella Fri 22-Apr-16 19:20:12

Hopefully op, I'm guessing you may need 125 or a bit more in the end, but it's best to go slow. You should feel better in a few weeks.

Post partum thyroiditis can definitely resolve but those numbers are pretty high.

tootsroots Fri 22-Apr-16 20:45:45

She thinks it is exacerbated by PP but given my numbers and how shocking i feel and how i didn't have the peak hyper pre hypo before month 6 , she suspects it is auto immune ... as you say the numbers were what she called severe.
She was so kind as i struggle a lot with remembering and focus... to answer her questions. She said this was all part and parcel of the symptoms that and the depression i thought was PND.

Ultrasound on the thyroid next week and blood tests before my 5 week holiday in June...

The best bit is is it is treatable hey!

What is this i hear through googleness is i might .. just might .. shift weight?

clarella Sat 23-Apr-16 08:02:49

Sorry I have forgotten if antibodies were found? It's more than likely.

Weight - possibly if you are on the right dose. This is key. For most people it's on t4, and bringing Tsh to 1 or just below, but everyone is individual. Some people do not convert t4 well so need t4 and t3. Very rarely some can only have t3. If you weren't over weight before pregnancy and don't think you had symptoms then yes.

It's normal and healthy to have some weight post baby (it's there to be used up via bf and keep body strong to help lift increasingly heavy baby!) but that should reduce over time.

Some/ most people do put extra weight on when hypo, but it's not actually medically speaking as much as people think. (See patient co uk) It tends to be water retention. I have only ever put a few pounds on but then start wasting away (I was very frail when I was first diagnosed). It weakens muscle and in extreme cases leads to myopathy so if people do less but eat the same amounts I guess weight is put on. However, digestion starts to be affected including of proteins. I loose my appetite.

I get quote cross about the focus that the general public have on thyroid issues and being weight as it hides some of the worst symptoms such as memory issues and executive function issues which can be highly distressing. People always look at me quizzically and say "but I thought people with thyroid issues are fat?"

1. It makes you weak, 2. Right now I'm well controlled!

It's getting to that right level of being well controlled that is most important, then you can get fit etc. Some weight will naturally reduce as you feel more active, do more and loose water retention and the rest can be lost like everyone else via diet and fitness!

LittleCandle Sat 23-Apr-16 08:18:37

Also be prepared to stand your ground. My bloods were coming back fine and my dosage was cut. I then spent 3 years complaining about my mounting symptoms, and was only put back onto an alternating dosage in October. It took about 6-8 weeks for the symptoms to start to resolve and some of them are still not right. I think the final symptom that convinced the doctor that I was really unwell was that I was not only losing my eyebrows, but I couldn't grow body hair. That was no real problem to me, but clearly is not normal. I do feel a lot better now, my mind is clearer and I have a little more energy, but I still feel like I could do with a boost for a few weeks before dropping my dosage down to the alternating one again. I had a goitre, but no symptoms when I was diagnosed and it was ultimately discovered to be an encapsulated tumour. I had my thyroid removed in 2 halves - first the tumour, then the rest of the gland and have been on thyroxine ever since. That was 20 years ago.

I hope you start to feeling better soon.

clarella Sat 23-Apr-16 08:48:42

It's ridiculous that bloods are 'fine' and so the dosage is cut?! This happens too much.

averywittyusername Sat 23-Apr-16 09:44:50

Hi toots, I hope you will be feeling better soon, can't imagine how you have been coping! I've been on 50 for 6 weeks now and noticed real differences after a week, specifically aching legs/knees better, dry patches of skin now better. I have to admit I was really hoping that the weight would start to magically fall off without me making any effort but so far no luck for me! but it will come.

Can you see your consultant sooner? It does seem like a low dose considering how high your level is, I would think they would be ramping it up soon, it does need to be done in stages if I understand correctly.

tootsroots Sat 23-Apr-16 10:19:10

I went yesterday and she doubled my
Dose already to 100mg. Hope this works!

I eat fairly well so hoping the water retention drops... I was never thin so can't expect that. But the 14 I was pre preg would be wonderful given how well I am eating ... I didn't lose a lb after birth or bf! I put on a stone! Mental!

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