Would appreciate if anyone else could tell me has suffered these problems and could offer advice. I was diagnosed hypothyroid in early December 22 following blood test after an alarming vertigo episode where I thought I had a mini-stroke. Since then my balance has slowly improved but I can no risk taking our dog for a walk or go into crowded areas without the help of a walking pole. I accept both problems could be a result of something else entirely but could maybe be connected with thyroid gland….?
In December my TSH was 67 which I now know is incredibly high ! I was prescribed 25mcg levothyroxine ( I am 70 years old) increased to 50 mcg 8 weeks when TSH was down to 39. The latest test revealed TSH of 14 & T4 of 11.
I have face to face appt with GP this afternoon to discuss ongoing dizziness and sore mouth. I have no weight gain, having been intravenously fed for 15 years since treatment for cancer of the oesophagus.
For 3 years at least I have had B12 deficiency, now under control (2000) as I self inject; Vitamin D adequate at 75; Ferritin 72; Foliate 19; all ok
I have to admit I feel quite demoralised and depressed. I thought with TSH reduced from 67 to 14 I would be feeling much better, but if anything, I feel more anxious than before. I seem to have completely lost my joie de vivre. Any moral support would be most welcome. This is such a helpful, sanity-saving site and I am so glad I have found it!
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You are only 4 months in to treatment and as yet your TSH is still pretty high at 14. You haven't given the lab ranges - numbers in brackets after your result number. We do need to see them as they vary from lab to lab. Your FT4 does look low by most ranges.
Did you do the test as per the protocol recommended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone. Taking Levo just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
It's really not surprising you have multiple symptoms and it can take many, many months to feel well again. Your symptoms are highly likely due to your low thyroid hormone levels. Every cell in the body relies on thyroid hormone and symptoms can be many and varied.
The aim of treatment is to get the TSH down to 1 or just below, that is where most people feel well. Blood tests are every 6-8 weeks adjusting dose upwards until that is achieved.
What supplements do you take?
Vitamin D should be around 100 - 150 for best use of thyroid hormones. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...
Ferritin should be around 90 - 100 for best use of thyroid hormone. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Hopefully your GP will increase you dose again when you see them.
Many thanks for your helpful comments Jaydee. I have been reading advice given to others for the last few months and Slow Dragon was very helpful at the onset of my diagnosis.
April 12
T4 11.70 (Normal range 10.5-24.5)
TSH 14.8 (Normal range 0.27-4.2)
Private blood test for Vitamin D recommended on this site
75 (Adequate range 50-175)
I am aware of recommended protocols for Blood tests. The problem I have in maximising vitamin and iron intake is that I can’t swallow at all, not even water, so everything including levothyroxine has to be administered with syringe via feeding tube. I have vitamin D3 drops and know to separate them from levothyroxine by 4 hours. I shall now look for iron supplement that can be taken intravenously. I really appreciate the time and effort you have taken to respond. 😍
Where does your feeding tube go to? If it avoids the stomach you are probably better off in many regards to the rest of us using our stomach. Also, your feeds are likely fortified.
Sorry I missed the bit about feeding. Do you mean you have a PEG? I'm not aware of being able to be fed intravenously.
Regarding iron, it's a complicated thing. Ferritin is a storage nutrient and treated slightly different to iron. It's not recommended to take an iron supplement unless you have done a full iron panel and know the status of that so please don't take an iron supplement. Your result is really not that bad, just a teeny bit more would have been more optimal.
it leads into the small intestine avoiding stomach. I have had it 15 years and never had any problems until 3 years ago when B12 deficiency was diagnosed. Thanks to your sister site I am on top of that now and cope by self injecting. I was told lack of B12 was due to the feeding tube but now I wonder if it wasn’t that thyroid deficiency caused B12 deficiency. ……
Well I would hope that you are tested fairly regularly for vitamin deficiencies etc
In a strange way you have an advantage over most hypo people as your feed avoids the stomach which is where we have issues with low stomach acid.
I'm glad your B12 deficiency was diagnosed. Did they test you for Pernicious Anaemia? I'm really not well versed in the details of being tube fed and how nutrients work being absorbed that way. As I mentioned before its the stomach that causes hypo peoples issues, so if your feed is going elsewhere then not so likely to be thyroid deficiency causing it.
On 50mcg levothyroxine and most recent test results
TSH of 14 & T4 of 11.
Please add range on Ft4 result. It looks low , but ranges vary from lab to lab
High TSH shows you are ready for next dose increase in levothyroxine up to 75mcg levothyroxine per day
The aim of levothyroxine is to increase dose slowly upwards in 25mcg steps until TSH around 1-2 and Ft4 and Ft3 at least 60% through range
ALWAYS test early morning and last dose levothyroxine 24 hours before test
Which brand of levothyroxine are you currently taking
Or are you taking liquid levothyroxine as tube fed?
Many people find Levothyroxine tablets brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots,
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.
Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
Brands I was given have varied from TEVA to Wockhardt to Accord. I haven’t really noticed any difference, all tablets to be crushed (I think liquid too expensive).
T4 11.70 (10.5-24.5)
TSH 14.80 (0.27-4.2)
I would be stumbling in the dark were it not for the support of yourself from the outset and now Jaydee. It’s made such a difference to my state of mind. I shall now request increase to 75 mcg this afternoon . My initial appointment was by telephone on May 4 so I doubt if any increase is on agenda……..
Hi, I am quite recent Hypo too, Oct 22, I was similar very high TSH am I am now a lot better. The wise team on here are amazing and have helped me so much.
I started to feel better when TSH at 4 . Have they looked for antibodies. It is useful to know if they are there and it is autoimmune type.
I am gluten intolerant and I feel it on my lips I think. If autoimmune type then many many need to be gluten free,
I had lots of dry mouth stuff as well, all fine now
I had a weird moment back in October dizzy, weird that I now wonder about stroke like you did. Not had anything like it now.
I have not fully read everyones comments, so sorry if repeating but :
1) get a T3 test done as well as T4 and TSH as you need good levels of T3
2) Log your blood pressure and heart rate. Consider logging temperature first thing in a morning. Write down how you feel and what feels good and bad. It is not easy with all the brain fog type stuff and the fatigue.
3) Rest and give yourself time to mend. Your body will be starting to crank up again but it all takes time.
I could not find the link but some articulate person posted a piece on the feeling when elation comes back - I am sure it will and with the help of the sunshine ... 🤞
I found the forum daunting at first as, so many people are suffering but it seems this is 10 to 15% overall, who when treated are still low on T3 even after taking levo/T4.
Perhaps take comfort that there is support if you are one of the unlucky ones.
It is a lot to take in when our brains is mushed, I have to write it down ( I email myself)
know exactly where you are coming. You are the first person I have come across who started off with TSH higher than myself! That in itself is a comfort 😂
Your Dr needs to help you with correct doses to get your TSH under 2.5. Anything above 2.5 you will feel hypothyroidism symptoms. Balance is one I suffer with if my TSH goes above 2.5. I feel much better when my TSH is around 1.00. This is also where a healthy thyroid persons TSH normally is. You need an increase in your levothyroxine. Possibly up to 75mcg a day. I split my levo. Maybe take 50 in the morning and 25 going to bed.
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