Hi everyone! I was diagnosed hypothyroid in February 2017 and started on levothyroxine. I’d been trundling along on 100mcg for past 9 months - still feeling groggy for want of a better word. Saw an endocrinologist December 2017 and have follow up appointment at end of this month. Since December I’ve been feeling worse with the main culprit of fatigue that’s just flooring me and feels like it’s worsening. I’ve also noticed I’ve been craving salty foods since December/January time - normally have had a sweet tooth. 3 weeks ago I collapsed at work and ended up in A&E. ECGs were fine and I was advised to follow up with GP. I’ve been off work since then as I’ve felt so dizzy (like being drunk except I’m tea-total). I’ve also been sleeping all the time and feel like my body has hit a brick wall. The salt cravings seem to have increased too. I’d pushed for bloods with GP as they diagnosed labyrinthitis and pooh poohed the idea of thyroid being off. Bloods came back yesterday and TSH 9.7 and free T4 at 16.4. I’ve now been increased to 125mcg levothyroxine. Is this “normal” for hypothyroid? I’m worried about work as GP signed me off for a further 2 weeks because of this constant dizziness. Any ideas for dealing with this would be gratefully received. Sorry for rambling on. Tia x
Sudden onset of constant dizziness - any advice... - Thyroid UK
Sudden onset of constant dizziness - any advice please?
I think initially it takes time to get the medication dosage right for hypothyroidism and may take a bit if time to feel the difference with the extra 25. This is my experience with thyroxine over 18 years since diagnosis , as well as having to oush GPs to do bloods etc or recognise symptoms coukd be thyroid related. Maybe you need to rest, nuture yourself to allow this and get over the ear problems too. Hope you get well soon
Thank you. It’s quite a learning curve isn’t it?
I think most on the forum - after a couple of months know more than most GPs or even some Endos. 
Good morning, a lot of what you’re saying will almost certainly be down to you’re previous under medication. With a TSH of 9.7 I’m not surprised you feel bad.
Have you had your vitamins B,D and ferretin checked ? You can feel rather off colour with additional symptoms when these are low so combined with the high TSH/low T3 you will feel worse.
Did your GP retest you 6 weeks after your initial diagnosis ?
You’ll get some good advice on here so hang on in there and hopefully you’ll soon be on the road to feeling somewhat better.
My vitamin D was low, finished 5 week booster course 2 weeks ago and now on 1000 units daily. Yes, my initial TSH was 6.4 so was started on levothyroxine 25mcg, which then dropped to 4.8 at 6 weeks. Levothyroxine was increased at 25mcg increments to 100mcg according to bloods until TSH reached 2.97 (at 100mcg) which is the dose I’ve been on for past 9 months. Thanks x
Are you able to have Private Testing done through Thyroid UK - see link below ...
thyroiduk.org.uk/tuk/testin...
Test Kits are sent to your home and results sent to you by e-mail. Go for the test that includes B12 - Folate - Ferritin - VitD. These are often LOW when Hypo and could be the cause of your symptoms. All the Tests are rarely done in the NHS - and so people remain unwell. TSH - FT4 - FT3 and Thyroid Anti-bodies TPO & Tg - to rule out Hashimotos.
What other meds are you taking ? Supplements ? Do you have gut issues - and finally - how do you take your Thyroid medication ? Sorry for the questions - trying to build a picture
On medication for the Thyroid the TSH needs to be 1 or under to feel well and the FT4 and FT3 in the upper part of the range in most cases. Something is not right as the T4/Levo you are taking is not being effective ....
I wasn’t aware of private testing so I’ll look into that, thanks. I’m low on vitamin D - finished 5 week booster course 2 weeks ago and now on maintenance dose of 1000 units daily. Iron levels ok apparently. Meds are levothyroxine, fluoxetine, vitamin D and omeprazole. No other supplements. Take levothyroxine first thing in morning - I set my alarm for 1 hour before I need to get up to take meds then go back to sleep for an hour so that I can have a cuppa when I get up. Other meds I take at night before bed so they shouldn’t interfere with levothyroxine. Thanks for your advice 😊
Why are you taking a PPI ? - that will block your uptake of vitamins and minerals and in particular B12 . If B12 is below 500 then it can become a neurological issue - please scroll down in the link below about B12 and the neurological symptoms are listed first ....
b12deficiency.info/signs-an...
When Hypo - it is more common to have LOW acid in the stomach - not high. How long have you been taking this medicine ? It is designed as a short course only - around 8 weeks. It is a HUGE money spinner Big Pharma sadly and causing more illness needing more drugs. The symptoms for both High and Low acid are similar. Lots of posts here on the forum if you can use the Search Facility - happy to help
The Anti-Depressant you are taking contains Flouride I believe - a known thyroid suppressor. Low mood can be caused by LOW B12 - Low VitD - and most importantly Low T3 - the most important thyroid hormone and rarely tested.
Now you are on a maintenance dose of VitD it is important to take the co-factors of Magnesium and VitK2-MK7. VitD can improve the uptake of calcium from foods and the K2 directs the calcium away from the arteries and soft tissues into the bones and teeth where it is needed.
NEVER accept OK from a Doctor with regard to your test results. Always obtain copies of all test results that are legally YOURS. You can then monitor your own progress to wellness and pick up on things that are often missed - yes it happens.
I am not a Medic - I have Hashimotos - Crohns - B12 Deficiency and having been on this forum for over 6 years I have learnt so much from others that know more than me
Ooops - sorry forgot about the salt cravings - can be linked to Adrenals - check out ...
Wow! I’m learning lots here, thank you. GP started me on omeprazole around November as they thought I had acid reflux and have been on 20mg daily since then. I can’t honestly say it’s made much difference, GP just advised to continue with it....
I also wasn’t aware of needing magnesium and vitK2-MK7 alongside vit D so thank you for that info.
I’ve told GP about salt cravings on 4 occasions as they are definitely intense on occasions - GP said to limit salt intake or I’d risk high blood pressure! Didn’t mention anything about adrenals to me. I’d mentioned it as up til December I’d been a right sweet tooth but over Christmas, and since, I was more into salty foods rather than sweet foods.
Thank you so much for your help, I really appreciate it 😊
This Forum exists with 78,000 members due to the lack of knowledge at GP level. We have to read and read to learn. Please try and read the links I post as they back up the information and you can then progress your research in a direction of your choice
Docs do not believe in Adrenal issues - it is a grey area - but there is a 24 Hours Saliva Test through Genova Diagnositcs I believe, which will tell you what is going on. The NHS do a morning blood test which does not tell you a lot. I live in Crete so am slightly out of touch !
Salt is NOT a problem as long as it is either Celtic Sea Salt or Himalayan - both contain so many important minerals - which are not in the very processed white table salt .
When the Thyroid has been under or untreated for many years it puts a huge strain on the adrenals and lowers vital hormones. Adrenals LOVE VitC so take as much as you can .... make sure it is a good one - look at Cytoplan.
Your GP will not mention VitK2-MK7 - they are not trained in vitamins and minerals at Med School - no money to be made !!
So your GP only 'thought ' you had Acid Reflux - well they earn funding points for prescribing such meds - but nothing for improving your vitamin and mineral status. When you do your next tests - hopefully privately - post your results in a new post so more people can see them and comment. Will look out for them.
Try to wean yourself away from the PPI - lower it slowly. There are natural treatments like Apple Cider Vinegar and Betaine HCL. When Stomach Acid is low it is not possible to break down proteins efficiently and so they hang around in the stomach too long before passing into the duodenum. This causes fermentation in the stomach - which can give the feeling of fullness and the upward movement of gases into the oesophagus.
Salt cravings can be an indication that you have adrenal fatigue. There is a link between adrenals and thyroid so it might be worth investing in a saliva cortisol test to see whether they are operating as they should. Try drinking an 8oz glass of water in the morning with 1/2 tsp of sea salt (not table salt) and see if this relieves any of your symptoms.
This is just a random link which may be of interest:-
livestrong.com/article/4590...
Thank you. I’ll have a look at the link, thanks.
If you can't stomach salt in water, you can take it in orange juice. That will also give you some of the vit C that adrenals need.
Good idea, thank you 😊
You're welcome.
I have had labrynthitis twice, 12 years apart. Once when I had a fully functioning thyroid and the second time 3 months post TT. The second time my medication still wasn’t correct but the symptoms were no worse than the first time except for increased fatigue. So while the dizziness could be connected to undermedication don’t rule out labrynthitis, it is normally set off by a virus and can take up to 12 weeks to fully resolve. A small number of people get some hearing loss so push for a hearing test once the dizziness has subsided. I hope you feel better soon.
Thank you. Thanks for the hearing test advice as I wasn’t aware of this.
You were underdosed to have a TSH of 9.7 so your doctor should have been increasing your dose of levo until the TSH was 1 or lower. Many doctors wrongly believe that anywhere in the range is fine, even as high as yours.
Your doctor should consider if you have a condition called labrynthitis as I had this at one time and you cannot move head as everything spins round and your balance is out of kilter.
webmd.com/brain/what-is-lab...
When we are given levothyroxine the dose is gradually increased until we feel well with no clinical symptoms. It is not always achievable if doctors restrict doses. This forum recommends a TSH of 1 or lower and a Free T4 and Free T3 towards the upper part of the range.
If doctors inform us that we're on sufficient and after six weeks you still have symptoms, or symptoms appear a couple of months later, you should request a new test.
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