Please help.

[Tracey05]

Hi been ill for years. 12 weeks after my 5th child was born by section. Took vertigo really bad housebound. Always had problems with siatica and pins needles numness etc. Slowly getting worse more tablets. Last 2 years ive taken ear infections burst ear drum fluid in ear just but no test. Anyway long story short finally got blood done. Last lot 2009 was borderline. Dr on friday low thyroid and blood count of 10. Started on 25mg. Sorry for long post but i feel awful and to be honest am done with pain tiredness and having no life. Youngest isnt even 3. Thank you for any advice. X

[SlowDragon Administrator]

Sounds like you might also have low B12

B12 can be significantly used up during an operation (e.g. When you had cesarian for example)

Get a GP to check B12, folate, vitamin D and ferritin. Very common for some or all of these to be low when Thyroid is under active

b12deficiency.info/signs-an...

Do NOT supplement any B vitamins or folate before testing or test will be useless

b12-vitamin.com/anesthesia/

[Katepots]

Please can you post your blood results with ranges so we can advise.

Really important to get proper thyroid testing. FT4, TT4, TT3, RT3 plus thyroid antibodies to check for Hashimotos Thyroditis which is Auto Immune and very common.

B12,Vit D, folate and Ferritin as some if not all are likely to be low quite thyroid issues.

If your GP won't test all look at bluehorizonmedicals.co.uk for private testing. Not cheap but if you can afford it it's so worth it.

Thyroid plus 11,12&15 are all good comprehensive tests.

Don't settle for the GP telling you all is fine you need a copy of results. I was told for years nothing was wrong and felt like death. It turned out I was hypo and Hashimotos after doing my own testing so undiagnosed for 20 years. There's lots you can do once we know results and I'm sure we can help you to feel better than you do now!

[Tracey05 in reply to Katepots]

Thank you so much. I will ask for test results etc. X

[lisabax]

Just to add to what others have said, please be aware that 25mg is only a starting dose. The doctor should check your bloods in 6-8 weeks and your dose should be increased as necessary until you reach a dose that you need. Not all doctors know to do this. LB

[HLAB35]

I agree with all the great advice above. One thing you can also do for yourself, just to get you started, bearing in mind that doctors are often abysmal in their knowledge of conditions like ours, is to look into improving your absorption of nutrients in general. Unless you're an anomaly, most of us with low thyroid also have low stomach acid. This makes it a mammoth task to absorb all the vitamins and minerals we need especially those with big complex molecules including b12 (it's called b12, because it is the largest B vitamin molecule). Why GPs, who are paid to understand biochemistry(?), can't put two and two together and actually explain this to their hypo patients, is beyond me.

The health ramifications of low stomach acid are massive - this is why doctors treating hypothyroid conditions should not be casual, dismissive and flippant about it.

It took me ages to realise that supplements weren't that effective until I started taking digestive enzymes with my meals. Fortunately for us, digestive enzymes like Betaine HCl and Pepsin are widely available online now, and not that expensive. Feeling very tired after meals is a sign that you're struggling.

[Tracey05 in reply to HLAB35]

Thank you for advice. Xz

[HLAB35]

drmyhill.co.uk/wiki/Hypochl...

[Sleepybunny]

Hi,

If you suspect that low B12 may be a possibility then there is lots of info about B12 deficiency on the Pernicious Anaemia Society forum on HU.

Risk Factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Link about nitrous oxide and B12 deficiency

Nitrous oxide is in "gas and air mix", which is sometimes used in anaesthesia for operations and for pain relief during labour.

gov.uk/drug-safety-update/n...

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

I am not a medically trained person, just someone who has spent a long time trying to find out what's wrong.

[Tracey05 in reply to Sleepybunny]

Thank you. I know what you mean. Ive looked at my vertigo and the symtoms i have. Just got to wait until gp catches up with how long i fight to get seen and keep on at them. X

[Katepots in reply to Tracey05]

I sympathise as suffer badly from vertigo too. Have you tried betahistine (think that's correct spelling I'll check later) found the only thing for me that helps.

[TSH110]

Once they up your dose to something more robust you ought to see improvements, but it can seem like an eternity. I went gluten free and that helped. Getting vitamin/more detailed blood tests is good advice. I had horrid symptoms - lots of them and it never occurred to me my burst eardrum might have been related till reading your post. The illness takes a lot out of you and recovery may be slow but it is good you are being treated now and you have come here. You will get lots of really good advice and support from the community and will not feel alone struggling with a very debilitating and serious condition. This is hard but I cannot imagine how you have held body and soul together with five children to look after in addition - you must have incredible staying power.

[Tracey05 in reply to TSH110]

Thank you very much. I have to be honest it those 5 children that have made me get up. May not be physically well enough and i have been scared and bless so have they. So i tell myselve that each wee step no matter how small you acheived. Xx

[TSH110 in reply to Tracey05]

Tracey05 gosh what commitment you have to your children 😍. My mum had 5 of us and must have been hypo for years when I think back now. My dad did a huge amount to support her. She simply refused to see the doctor and wore polo neck jumpers to hide the goitre she had. She told me once she was too afraid of them operating and cutting through her neck. It was some kind of denial for sure. She ended up having emergency chemotherapy and was lucky that it worked, so they never did operate on her. She was fine on Levo but it came back eight years later and could not be halted this time. We were all grown ups by then. Having had hypo myself very seriously before treatment I realise how terribly hard it must have been for her all those years. She simply brushed it aside saying she felt like a fraud (bald and very frail after blood transfusions during her first chemotherapy sessions.) that mental attitude must have helped pull her through it all. I just soldiered on thinking I was a hypochondriac and gave up going to see the doctor. I am in such a better place now - it has taken some years, I hope you will soon get there too.

[HLAB35]

While you're getting tested for bloods that reallyfedup123 has listed, here's a suggestion of a variation of something I did that helped me...it's certainly of more benefit than some of the rubbish GPs suggest for hypo patients - e.g. antidepressants and PPIs. A lot of evidence points to gluten, soya and lactose making our problems worse (especially gluten).

(week 1) Take digestive enzymes with meals - firstly just with the largest meal, to check your tolerance until you're able to have them with three to four meals - smaller meals are better than big ones. I eat at 7.30, 12.30, 5.30 and 8.00.

(week 3) Cut out added sugar, wheat and milk, but carry on with other dairy and grains. (Almond milk is nice.)

(week 5) Continue with elimination diet, but cut out all lactose apart from butter.

(week 7) Cut out gluten altogether.

(week 9) Reintroduce full fat yogurt and cheese and some sugar (in chocolate and puddings after tea).

Going fully gluten / lactose free in one go can have a bit of a rebound effect (detoxing) so this may be more gentle... this timeline is just an idea and could easily be tweaked. You'll notice how you start craving healthy foods after a bit!

[mgh348 in reply to HLAB35]

Why add back some sugar? There is no need for this, will only raise insulin level after starting to get it under control.

[HLAB35 in reply to mgh348]

I don't mean full reversal by all means - just a little bit of something at teatime. I'm not a puritanical person and as I have to cook for others it'd be too much to always miss out on dessert. Puddings such as potted crumbles (in ramekins) and baked apples don't require a lot of added sugar - just a teaspoon per person and high cocoa chocolate contains quite a few good things (either as cocoa powder or in bars), but you need a little sweetness (honey is a healthier alternative) to detract from the bitterness. This is way less than is found in most commercial cereals say.

[Tracey05 in reply to mgh348]

Hi am aware of this also. As Dad haa underactive thyroid and type 2. X

[Tracey05 in reply to HLAB35]

I will give this a try thank you. X

[Katepots in reply to HLAB35]

Great advise, on top of gluten and casein(cows milk) I'd add that the nightshades can really be sa problem. Potato, tomato, aubergine...

If I eat potato the next day I feel like I'm recovering from flu and my hips are agony.

Worth a try. Get your dose of leve upped asap, 25mcg is just a worthless dose, most DRs start on 50.

Have you signed the petition?

[Inana]

I'm so sorry to hear you're suffering. I'm exactly in the same boat with lots of vertigo and also on 25mcg Levo. We just have to wait until the Levo starts working. I hope you feel better soon.

[Tracey05 in reply to Inana]

I hope you do to. Thank you. X

[miglet54]

I'd look to b12 deficiency.

[eeng]

Vertigo is a common symptom of hypothyroidism. It really would help if we could see your blood test results (with the ranges - usually the figures in brackets). It is your legal right to have a copy. If you are challenged or asked why, you can say 'for my records'.

The TSH result is the one the doctors always go by. It needs to be down to 1 for you to have reasonable chance of feeling well, and at the same time you need your Vitamin D, B12, Folate and Ferritin results to be at least half way up the lab range. Even if we have a healthy diet people with thyroid issues find they get low on these. I haven't gone lactose/gluten/sugar free but feel much better with good levels of these nutrients and a TSH under 1.

There is hope, and you should start to feel better within 6 months so long as your doctor know what he is doing.

[Tracey05 in reply to eeng]

Thank you. As am all knew to this. I will be asking those questions and looking into this x

[HLAB35 in reply to eeng]

Many people with Hashi's do benefit from going gluten free as it tends to reduce their output of antibodies towards the thyroid.

If your low thyroid is not autoimmune then you may not therefore experience the flare ups of extra antibodies that arise when they 'see' gliadin in the gluten which is similar to thyroid tissue (which they'll attack as well).

chriskresser.com/the-gluten...

A friend of mine with no thyroid isn't gluten free as her thyroid was removed for another reason and she's doing fine too.

[kaylala68]

Hi sorry you are struggling, I to had terrible ear problems and vertigo, I was on 100mcg og levo for ages and I eventually went deaf and ended up with an implant. I was started on T3 after seeing private endo. The ent issues got lots better not completely though, I am still deaf, but life was more bearable. Hope you get the help you need.

Kaylala68 😌😌x

[Tracey05 in reply to kaylala68]

Thank you. Xx

[Tracey05]

Thank you. I feel like am banging my head off a brick wall. Ive put complaint in about treatment from gp. Xx

[Tracey05]

No i didnt. Still have loads of numbness. Been going to dr because of Vertigo and new symtoms since having 5th child. I have saddle numbness. Put on serc. Stemital, pregablin, longtec,baclofen,venlafaxine levorhyroxine,naproxine,otomize,dihydrocodien ans cant miss one tablet or every have a pain free day to be told.that my meds are causing brain fog wtc. Am only 40 been like this almost 3 years. I was a mother of 5 and could do anything i want. Now once ive even walk up the stairs feels like ive climb a mountain. Been on 25mg levo for a month and feel no better. Told ti wait 8 weeks before blood test x