Thank you to all for this resource, I am learning so much. I have B12 Deficiency treatment injections EOD Hydroxo, Tarsal Tunnel Syndrome and pretty sure an underactive thyroid for most of my adult life. Female, 55.4kgs.
I would like some advice please. I have been trialing Levo and have been gradually increasing my dose to 75 mcg. The trial has gone really well, I started on 25mcg for four weeks, felt really good for first two weeks then things started creeping back. Then 50mcg for four weeks, again felt great first two weeks and then symptoms started creeping back. Then 75mcg after 3 or 4 days I noticed my feet had stopped buzzing at night and my legs were more comfortable.
Improvements:-
energy levels much higher
much more upbeat
digestion
Blood results
17/06/22
TSH 1.6 (0.4-4.2)
FT3 2.6 (2.1-4.4) 21.74%
FT4 0.9 (0.7-1.8) 18.18%
24/08/22
TSH 0.9 (0.4-4.2)
FT3 2.4 (2.1-4.4) 13.04%
FT4 1.3 (0.7-1.8) 54.55%
These results are before starting 75mcg. Scan results; Small thyroid, relatively homogenous, Small cyst 2mm
I didn't know but for the second lot of blood tests I had an ear infection. Does this look like I am a bad converter and need T3 also? If I need T3 I cannot get it here in Portugal as far as I know. So I will have to get it online and am worried about that and the price.
Also I am now getting regular pulsing louder than normal in my ear and chest when I am tired (when I wake up in the morning or at night). So I have taken 50mcg of Levo for 2 nights will take again tonight to see if helps? Do you think I could be a bit over medicated?
Thank you for reading this.
Written by
Bubydizer
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Thank you for your response. I have not been tested for Pernicious Anemia yet, have been diagnosed with B12 Defic. I eat meat and at diagnosis was, and still am having lambs liver most mornings for breakfast so it is an absorbtion issue. I have neuopathy in parts of my feet, legs, tips of fingers. Before injections I had severe balance issues, was starting to slur words, facial numbness amongst other things. Balance, sluring much better with injections. I started the Autoimmune Protocol Diet when the pain started in my feet and other areas, it has helped me a lot and way better than the anti inflam. tabs the Doc gave me that just hurt my tummy!
vit D 68.3 ng/ml rec. values 30-100 toxic values >150, Folate >20.0 valor ideal >15, Iron, Ferratin. I hope the liver takes care of the iron, Ferratin and B Complex ( 1 tab a week cant take more)
Anti-thyro Tg.Ac. 14ng/ml uptill 115
Anti-perox TPO.Ac. <9 uptill 34
Serum Iron 124 (60-170)
Ferritin 119.8 (50.0-200.0)
Vit D Dec 21 all the rest last few months. Thank you for all your help.
that’s a lot of liver, how many grams per meal? I’ve only ever been recommended to eat liver once per week 100g max, as vitamin A can cause adverse symptoms. 🦋💚🦋
Yes it is a lot of liver and I am not popular in the house at breakfast time! I have about 70-80gms of cooked lambs liver with a lot of vegitables, nearly every second day. I like it and it does agree with me at the moment if I don't have it I really miss and dream about it! But I think I was malnurished for so long with a restricted diet (intolerances) and low appetite struggled to keep the weight on. Have been anemic and B12 Dificient for at least five years. I will get my Vit A level checked though, thats a good idea. Thank you.
Your TSH didn’t rise much when you had low normal fT3, fT4. Your conversion rate seems a little low, this could be because your TSH didn’t elevate enough to increase the T4 to T3 conversion rate. It’s most unlikely you became overactive from a few days at 75 mcg due to the long half life of thyroxine. It’s possible you could have autoimmune thyroid disease and this can cause erratic release of hormone.
I would wait a few weeks and have another blood test then. It’s a bit too early to find out whether you need T3 and things may settle down.
My endo aimed for TSH 0.2 - 0.5 and free T4 and free T3 (also holds for T4 and T3) in the top 1/3 of their ranges, I’d say you have a lot of room for further increases so I’d aim for those first, if then TSH and T 4 behave but the T3 is still not adequate you will know there are conversion issues. In my case that was so and I self medicate on NDT. I feel much better, but close relatives have been fine on Levothyroxine so it’s worth getting optimised on that first. Best to go slowly as levels can suddenly jump quite a bit with an increase, so stick to 6-8 weeks with a test to see what’s happened. ☘️🍀☘️
I hope it helps - you dont want to over shoot the mark by increasing your dose too quickly. My TSH plummeted with one of the 25mcg increases it was still about 5 tho, but better that 110 (it didn’t jump that much in one go sadly 🤣🤣🤣) it took 9 months to get it down - & it was 9 months of pure hell. I only really felt better on ThyroidS I don’t convert well. I have one polymorphism in DIO2 gene for poor conversion of T4 to T3 but that isn’t enough, even with chronic symptoms of persisting hypo, for these darn endos to give you T3.
When I was finally diagnosed it was easier to prescribe it back then but it was never even mentioned as an option despite my vociferous complaints about still feeling rubbish. I got a witch of a thyroid nurse who told me nothing could be done about it - what a pack of lies. Not sure if endo might have been more . sympathetic as I only saw that monster at the end she was supposed to fine tune it but she said you’ll just have to get used to feeling unwell for the rest if your life as there’s nothing more can be done. She suggested the useless BTF for guidance, and support, it was dreadful, full of falsehoods about NDT and nothing more than a mouthpiece for big pharma Levothyroxine monotherapy . I hope she ends up with it and suffers like I did at her hands - a real nasty bit of goods and a bare faced liar or the most informed thyroid nurse in the U.K.
So glad I found Thyroid U.K. with good advice and knowledgeable people on the forum who are so supportive and generous in their responses.
Yes, good idea splitting 25mcg I will remember that. That sounds horendous poor you, I hope you are feeling much better now. Yes I have started to wish my Nat Health Doc experienced some of my conditions, she is very nice but hasn't a clue. I have been anemic for years, five years of blood test shows this. Totally agree so lucky I found this group. Thank you. Take care.
Increasing every four weeks is rather too soon. It takes 6 - 8 weeks for a dose to settle into the system.
However, that aside....
It is quite common to feel worse after about 2 weeks on an increased dose, That is because the body is first relieved to have more hormone... then discovering that it's not enough so symptoms return.
So I have taken 50mcg of Levo for 2 nights will take again tonight to see if helps?
We don't take Levo as we do a painkiller for a headache! It takes/ needs time to " help"
It's unclear ...
a) what dose of levo you were taking when the above tests were carried out
b)what dose you are currently taken
You mention 75mcg, then taking an extra 50mcg.....total 125mcg
So, it appears that you have gone fron having no medication on 17/06/ 22 to currently - 3 months later - taking 125mcg
The results above show hypothyroidism but the treatment has been rushed so your system is "confused" by this rapid increase and appears to be reacting accordingly
There is no quick fix for thyroid disease.
There is no indication of overmedication....just a confused system!
Unless FT3 is over range overmedication is highly unlikely.
Difficult to be sure from the above labs if conversion is poor because the doses had not settled Into your system.
Far too soon to be considering T3
First you need to optimise vit D, vit B12, folate and ferritin in order to support thyroid function/ conversion.
I suspect as well as B12 that your vit D is low.
You also need to have your thyroid antibodies TPO and Tg tested to check for auto immune disease....but SlowDragon has already explained that.
I'd suggest you return to 75mcg levo and take that steady dose for 6 weeks then retest. The results will point the way forward.
You will probably feel "rubbish" for a bit but persist and maintain the steady dose.
The test should include...
TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies.
Anything less does not give a full picture of what is going on and therefore makes any accurate decision difficult .
Thank you for your response. Sorry I am very good at confusing people! I dropped my dose of 75mcg down to 50mcg for two nights. I will continue with 75mcg. The first lot of blood tests 17/06/22 were before starting Levo. The second lot 24/08/22 were taken while on 50mcg before starting 75mcg. Your information is very reassuring I will stay on 75mcg and retest in 6 weeks.
I’m taking 75mcg and take 25mcg at bed and 50 mcg in the morning. This seems to help me sleep through the night and has stopped ‘the sweats’ during the day. 6 out of 8 weeks trial and feeling steadier now. I definitely had the same 4 week responses to 25mcg and 50mcg as you. I see others have asked questions about diet and vits, all has helped me.
Re your "B12 Defiency" did the doctor test to exclude Pernicious Anaemia?
If we have Pernicious Anaemia we have to have B12 injections frequently. I have a monthly injection but it is usually given every quarter. The reason is that our stomach cannot absorb B12 and can cause serious problems if undiagnosed/untreated.
Pernicious Anaemia untreated could create a more serious condition.
Hi,I was diagnosed with B12 Dif last December by the Doc but no I havent been tested for Pernicious Anemia I did ask but he seemed vague and I didn't know enough then. Because of my neuro symptoms I am following the BNF and NICE guidlines. I self inject with Hydroxo every second day. I feel so much stronger and my brain clearer and lots of improvements particulaly in my feet. I think there are two tests I can do while on treatment but they can not rule it out 100% so I am just going to continue with my treatment. At some point I will do the tests. Thank you. Take care.
You deserve a blood test to confirm or not if you have P,A, My mother had this condition and eventually GP said she needed no more injections. Both my sister and I thought that was 'good' but it wasn't good as mother developed stomach cancer and died.
Yes I will get tested your right it's important to know. I have to be clear of b12 for three days so wanted to be bit stronger before doing that. I am sorry to hear about your Mum. Take care.
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