Support thread for those with thyroid related disorders

[yeghoulsandlittledevils]

This is a support thread for anyone who would like to ask any general questions about thyroid function or life with thyroid conditions (especially if you don't want to start a new thread) and also for any Mumsnetters who have been diagnosed with thyroid disorders (hypothyroidism, hyperthyroidism, Hashimotos and related conditions) to chat and support one another. Please come and be part of the growing Mumsnet thyroid support network.

Do you have any recommendations for GOOD NHS Endo's? (I don't trust my local hospital - it's one of the worst in the Country (well, third worst, but...)

And considering that the Clinical Chief Officer of the Clinical Commissioning Group for my entire PCT happens to also be a GP at my surgery. Not my usual GP (who effing HATES me - to the point of reporting me to SS saying that I couldn't cope because I accused him of not following proper procedures with my epilepsy diagnosis, which he hadn't for 8 years at that point...), but one that HAS seen me since I started complaining of exhaustion, joint pains and muscle aches - and never bothered to tell me my TSH was raised in my previous blood test.

So, for obvious reasons, I would preferably like to go out of PCT area to see an Endocrinologist. Recommendations of anyone in London or possibly Addenbrookes or somewhere in between, known to be good at dealing with Hypothyroidism on the NHS?

I am marking my place on this thread for future reference. After over 2 years of feeling uttlerly rubbish, lacking energy, brainfog etc with this being dismissed by my regular GP I've found out from a locum GP ordering extra tests that I actually may have a problem with my thyroid. I have a medical appointment tomorrow to find out what the diagnosis will be and am very anxious about it (as well as feeling pretty narked with being fobbed off!)

OK I've just got back from the doctors today. I have been diagnosed with Hypothyroidism

It looks like my symptoms gradually progressed from around 2009 to the current day. In hindsight I started feeling pretty bad in July 2012 and I initially put this down to peri-menopause/menopause which was finally ruled out by blood tests in July 2013.

I've managed to get a print out of the Thyroid related tests I've had since 2000. Here are my figures, hope are useful / that they make sense!

2000 TSH 3 (range 0.4-6.3) T4 14.1 (11-26) OK
2005 TSH 4.3 (range 0.4-6.3) T4 13.5 (11-26) OK
2009 TSH 8.5 T4 11.5 Starting to move
July 2013 70 (range 0.3-5.5)T4 5.3 (10-19.8) Hypothyroidism?

Retested by Locum in Sept 2013

TSH 84 (range 0.3-5.5) T4 5.6 (10-19.8)
Plus Thyroid Peroxidase Abs > 1300 IU/mL (0.0-60.0) Above range

14 Jan 2014 Diagnosed Hypothyroid with a starting dose of 100 microgram Levothyroxine Sodium to be monitored after 6 weeks with blood tests by GP. Not referred to endocrinologist at this stage.

I hope I start to feel better on the meds as I thought I was coming down with ME and/or Chronic Fatigue Syndrome. Fortunately my mum and aunt nagged me to get retested because of my brainfog symptoms, which they also had at about my age. Like other posters, friends and family say that I am a shadow of my former self.

I'm not sure my GP is that supportive as they had actually ruled out Hypothyroidism when I went to see them in August 2013, despite having test results indicating it was on the cards (eek!). I shall monitor how I get on but I would like to get a second opinion.

thanks and best wishes to all, this thread will be a useful resource, it has already been a source of comfort in my hour of need prior to diagnosis!

You were actually hypothyroid in 2000 going by the figures you have posted and you have auto-immune hypothyroidism aka Hashimoto's Disease. I would be prepared to give your GP the benefit of the doubt on the 2000 figures as your TSH was still in range at that point, but even then, with antibodies, you should have been treated.

By the July 2013 test you were in real trouble. Not diagnosing and treating at that point is pretty much negligence.

You have been badly let down by your GP, but at least you have a proper starting dose of thryoxine and should start to feel better within a few weeks. Get re-tested after six weeks as it may be that you will need an increase. As a rule of thumb, a full replacement dose is 1.6mcg per kilo of body weight.

Are ALL GP's just useless when it comes to hypothyroidism? Mine missed it on a test in Nov 2012, leaving me untreated until now. And I'm obviously not alone in that. Why are they just looking at 'ranges' on TSH tests and not even then half the time not at the patient's symptoms and quality of life?

The other thing to bear in mind is that it's not even that they just look at ranges - a lot of GPs are using an out of date range. 0.3-3.0 is what I have been told to be normal, with 1-2 being more normal and especially important when pg not to go over 2, just to be cautious. I always hover around 1.something (1.6 or 1.8, something like that), whilst on meds. Still symptomatic, but as above I'm fortunate enough to have a GP who tries to treat those symptoms.

As for endos, unfortunately I don't have much experience to share; few people will, because hypo patients aren't usually referred to an endo unless the GP realises something very important to deal with. Unless you're pg; I saw an endo whilst pg and he was very good, don't remember his name but he was a consultant at UCH.

Still very much dealing with the aches and pains, but leaving it a few weeks to see if it improves and if not I'll be back at the GPs.

Wish me luck - I'm about to go to my crappy GP and insist on a TSH test, FT4, FT3 and thyroid antibodies. He's not going to want to do it , because to get a result that shows the bleeding obvious that I have hypothyroidism, will show that he was negligent in not treating me after the blood test results in Nov 2012.

I have prior experience of this with this GP, over my epilepsy, and this appointment isn't going to be fun...

Can I insist on a referral to an Endo?

agree with delasi.

I've been bobbing between taking 125/150 alternate days, just 125 and just 150. My tsh has ranged from 0.5 to 2.5.

however I did not feel well at 2.5 (I am breast feeding a 13 mo old and work 3 days a week with sen children so quite physical) and my Dr agreed that 'we are treating people not numbers' so I've gone back up to 150, and waiting to see how it goes.

I'd seek second opinions if Dr is following higher tsh scores as being ok. it can take 2 months or more to feel fully better though.

good luck!

Thinking of you couthy.

Kbabs that is shocking. Glad that youv'e been given a diagnosis at last! Even with optimum treatmeant, it still seems to take at least a couple of months until your body adjusts to the levothyroxine, and the dose is going to need to be adjusted further after that.

didn't see your post kbabs- that is truly shocking.

I strongly urge anyone with a thyroid problem to join the British thyroid foundation (a charity) as they have lots of good advice and quarterly news letters as well as meetings you can attend. often there are guest endo speakers who you can speak to.

at one such meeting a professor said it's very good to record results and also how you feel, including muscle strength, so you can judge your best level. interestingly when I took up yoga I noticed that my muscles were weaker when I had bit of a dip.

be very careful about calcium supplements - do not take within 4 hours of thyroxine.

get a good daily dose of iodine though yoghurt, cheese and fish. strawberries too!

vitamin d helps too as does selenium so eat a range of nuts daily and consider s vit d supplement. I've found extra b vitamins helpful too.

darjeeling Although fresh strawberries can also be goitregenic - I find they mess with me a bit

Sorry for the downer on strawberries!

there's really not that much iodine in stawbs just a good excuse to eat them! imo their goodness would out do any possible 'negative' effects which I believe probably wouldn't be much unless eaten all day every day.

www.btf-thyroid.org/index.php/thyroid/fables

doesn't mention strawbs but broccoli is supposed to be more of an issue. but as it says, you don't need to worry about such foods if you eat a balanced diet.

I think I eat far too many strawberries when they are about...!

I think I must look like total shite. My GP didn't even need to hear half my symptoms before saying that hypothyroidism was a 'possibility' ignoring the previous test results.

The blood test forms he has given me are going to test for :

• Full blood count
• Thyroid antibodies (I didn't even have to ask!)
• Renal profile
• Liver profile
• Creatinine (serum)
• B12
• Folate
• Ferritin
• Random Glucose
• Thyroid Function

Where it says thyroid function, I think that's a bit wooly. It doesn't say if that's just TSH, TSH and T4, or TSH, T4 and T3.

So gawd knows what sort of results I'm going to get back.

I have left the issue of the previous test for now - it's far more important for me to get well again.

He has marked the test sheets with "?hypothyroidism", without actually using that word in the consultation.

I've had to book a pelvic exam with the lady Doc at the surgery too , because of the fact that my periods are coming every 2-3 weeks, and are heavier and more painful that they were.

Probably playing it safe given my issues in April last year, but I've had a clear smear since my LLETZ got rid of all the nasties. And half my cervix.

What do you mean, broccoli might be an issue? Are there foods I should and shouldn't be eating?

Can't follow the advice to eat nuts because I have to have a totally nut free house due to the severity of DS3's allergy. If I ate nuts outside the house, I'd have to shower and gargle with fecking mouthwash before going near him!

What other ways can I get selenium into my diet?

Should also add that we eat very little dairy, as DS3 is also contact anaphylactic to that. No pineapple, kiwi or papaya in the house. And no humous or beans either, as he's allergic to the majority of legumes, bar peas and sweet corn. No soy either.

He has a lot of allergies...

I'm allergic to tannins, so no kidney beans, red wine or tea.

What shouldn't I be eating, and what should I be eating? Maybe we can come up with alternatives.

Cutting out broccoli is going to prove to be a PITA. It's the ONLY vegetable that every person in my house eats! and my bloody favourite.

Hi all. Just marking my place so I can come back and have a read of the thread. I am hypo, gone from 50mg to 175mg thyroxine a day in the last few years. Can't say I feel any better!

no no no - enjoy your broccoli! look at the link; there's lots of stuff about foods 'hurting' thyroid. not true.

(my cousin is a research scientist on iodine/ thyroid). briefly; you do need some iodine in your diet. easily achieved though daily portions of dairy and fish. some people take kelp etc - too much iodine is harmful to the thyroid.

oops sorry saw no dairy - fish is good. but don't worry excessively please!

is he allergic to all nuts or just peanuts? one Brazil nut a day has tonnes of selenium but again I wouldn't worry too much.

Just want to add (don't want to confuse anyone!) that I have cut out a few foods having noticed an effect, but it's very few and only raw (for me, that's whole servings of cabbage, soya and straws). In small amounts I still have them and eat large quantities cooked (love broccoli and often put cabbage in soups!). So as darjeeling says, you don't have to cut out anything and many of these things have little or no effect.

You can get selenium supplements too, look out for Holland & Barrett sales or Boots 3 for 2.

I meant strawbs... silly autocorrect...

Anone have a painful throat with hashimoto's? If feels like a lump and odd when swallowing but gp says thyroid is not enlarged.

Ruby, I had that when I was taking too much Levothyroxine, sometimes a fizzing/tingling feeling (not unpleasant) and hoarse voice, sometimes it felt raw. I think someone with hyperthyroisism was saying they had painful throat earlier in thread (or I might have read it as a symptom of hyper...)