Latest bloods TSH 5.4 ref range 0.35 to 4.7 and Serum free T4 is 7.5 with ref range 7.8 to 21.00. I have just asked my GP to chase the Endocrinologist with my latest results as i believe i now need my alternative meds (can not tolerate levothyroxine). I am currently tingling almost itchy all over and looks like i am starting with the h pylori bug again. I was just wondering if anyone had tingling all over prior to their diagnosis with hypothyroid.? I am really concerned now because if i get the current Virus with no med's for underactive thyroid i think i will be buggered. With a previous diagnosis already been made i am not sure why they are waiting to give me meds.
Tingling all over?: Latest bloods TSH 5.4 ref... - Thyroid UK
Tingling all over?
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maplewood
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Am so sorry to hear whats happening to you. Have you tried ringing the endos secretary -they can be really helpful in chasing things up for you.
Have you had your B12 level checked? You need to be over 500. Low B12 is common in hypothyroidism and tingling is a symptom of it. Have a look at B12d.org they have a symptom checker.
Your ft4 is low so they do need to get you onto meds. What are you hoping to be prescribed?
I would be happy with anything to be honest. I mentioned B12 to GP but she did not jump on it. I just want to sort myself out because i am concerned i would not have much fight in me if i got the virus. I am hoping the Endo responds quickly, probably down to money i guess x
Awww you poor thing. Ring endos secretary & ask for help. I found secretarys of consultants very helpful in the past. With the epidemic kicking off they really do need to move on this. Your ft4 is below range even though the TSH is well under the ridiculous 10.
When i last saw the endo i told him i did not see why i had to wait till 10 because i have already been diagnosed in 2013, my TSH was 21 then. I felt really ill for months then and obviously i do not want to go back there again. I really hope they see sense, thanks x
Sorry for late reply. Thats shocking! How come you were taken of treatment after being diagnosed in 2013? Is he/she a thyroid friendly endo or one that specialises in diabeties? The latter generally know very little about hypothyroidism.
whoops. Sorry i did not realise you had come back to me. They took me off to see if the levothyroxine was what was causing me a number of issues. It was proven twice i could not tolerate it. Now they are slow at giving me an alternative.
So you need thyroid meds & have proven the standard thyroid meds dont work for you so they leave you without! Have they forgotten their oath.....first do no harm? Shocking.
The alternatives are either ndt or T3. Have you tried NDT.? They can prescribe either to you. Its not. like they can do levo & T3 as you dont tolerate the Levo so its a choice of two meds.....
I would chase them up.....they are making you ill leaving you without anything!!
Thanks i know what you mean and when i feel better i will be taking it up with them. Feel really crap now cant hardly get off the sofa. Unfortunately the corona virus is taking priority and i fear i may be left behind. I am not sure if they would want to leave me struggling to prove something health wise or this is just a case of put on the scrap heap. I have told myself if i hear nothing by tuesday next week i am going to contact a solicitor. This is the second time as i went through all this in 2013 when diagnosed.
You need vitamin B12, folate, vitamin D, ferritin tested...highly likely to be very low
Important to test thyroid antibodies too
Hi i am taking supplements for all those currently as they were low. I have just heard however they will not treat me with my current level and even if my TSH gets to 10 without antibodies they will not treat me. I am at a loss.
What time of day did you do this test?
Making sure to get tested as early as possible in morning before eating or drinking anything other than water? This can significantly increase TSH
How long have you been supplementing vitamins ?
What were actual results of vitamin D, folate, B12 and ferritin before starting supplements
Exactly what supplements are you taking?
Have you had vitamin levels retested since supplementing
Guidelines say that you should be offered trial of levothyroxine if under 65 years old
nice.org.uk/guidance/ng145/...
Treating subclinical hypothyroidism
1.5.2 When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.
Adults
1.5.3 Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.
1.5.4 Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and
symptoms of hypothyroidism.
If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment.
Hi , i did this test first thing in the morning because they wanted to do a cortisol 9am test. Therefore it is likely i had drank a coffee before it. I cant access when they tested for vitamins etc but it was maybe sept 2019. Vitamin d, b12, folic and iron all low and started supplements. I haven't helped myself with the supplements as i took them religiously for a month and ever since a bit slack. I know i need to address that and it does appear my TSH is going higher now i am resuming them. The endo contradicted themselves as they said i was subclinical with no antibodies and did not need treatment and then said the GP could give me T4 but they would not give me T3. The GP asked for T3 agreement as i had a reaction in 2013 and 2019 after starting the T4. They will not give me T3 as they say i can not be allergic to T4 but i beg to differ. I had every side effect listed whilst taking T4. Do my last levels even warrant treatment? Where can i go if my TSH keeps rising and the T4 makes me ill. Why would it make me ill if it is just a hormone replacement? Frustrating xx
First step is to get all vitamin levels optimal
Then try levothyroxine...it can take a while to find brand that suits you
Man6 people react badly to Teva, but many who are lactose intolerant find it excellent
Which brands have you tried ?
List of different brands here
thyroiduk.org/tuk/treatment...
Liquid levothyroxine is another option...expensive, but not as expensive as T3
Any form of levothyroxine is much easier to manage than T3.
Essential to increase dose up high enough. Frequently people are left languishing on too low a dose
Even if we need to start on low dose, it still needs increasing upwards as fast as tolerated.
Bloods should be retested 6-8 weeks after each dose increase
NICE guidelines
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
BMJ also clear on dose required
Post re how to push for dose increase in levothyroxine
healthunlocked.com/thyroidu....
Recommend you religiously take supplements and get FULL thyroid and vitamin testing privately, making sure to do blood test as recommended
Starting on levothyroxine, getting dose high enough to see progress....if at that stage conversion is poor then adding small dose of T3 alongside levothyroxine.
Teva, Activis previously. Just had a call from my GP. She wants me to try the liquid form. It will be ready in a few days. I hear what you are saying about the supplements and will keep pushing them. Thanks for taking the time to reply xx
Could you possibly post a guide on what is considered low for B12, Folate, Vit D & Ferritin? I’m getting various peoples opinions. Thanks
Oh am so sorry to hear this. It does need sorting, leaving you to get more and more poorly is not acceptable at all and in addition they are leaving you vulnerable if the Coronavirus strikes. This needs to be pointed out to them and an answer to what their plan is. They have a duty of care to look after you! Would your GP chase......??
Just read a letter to my GP they will not treat me. They are saying that my TSH isnt bad enough and even if i got to a TSH of 10 without antibodies they wont treat me. What am i to do?
Think your doctor is a little misguided saying you need to have antibodies and a TSH over 10. Its not true you have to have antibodies. Is there no one else you can talk to in the practise? It is true that the guideliens state that they dont treat till TSH is over 10 but you have low ft4 -they should at least repeat the test. There is often a lag between TSH rising and low ft4.
It was the endo who basically said i was subclinical and as not reached a TSH of 10 not to treat.
Many endos are specialist in diabetes not hypothyroidism so are often misinformed and have little knowledge of underactive thyroid.
Hi there,
I did have a ton of tingling prior to getting on meds. It was my scalp, bottom lip, side of my face, hands, feet, toes, and lower legs. I also had cold patches on my thighs and hot spots on my calves. I have not found a ton of others that have had this experience, so I hope this helps you to know you are not the only one! Getting on meds & then optimizing my lab numbers stopped it all.
Thanks for letting me know i had cold patches in eyes and tingling on scalp and legs. I took Waveylines advice and rang the secretary. She said she had seen the note from the GP and sent it straight through to the endo. Fingers x i hear back soon x
SlowDragonAdministrator
Reading previous posts ...it’s more likely you were on totally inadequate dose of levothyroxine
Dose of levothyroxine should be increased upwards as fast as we can tolerate
If this endo is refusing to treat until TSH is over 10 you need to find a different endocrinologist
NICE guidelines
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
BMJ clear on dose required
Post re how to push for dose increase in levothyroxine
healthunlocked.com/thyroidu....
gp-update.co.uk/Latest-Upda...
Pins and needles is frequently low B12 And extremely common when hypothyroid
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Aim is to bring a TSH under 2.5
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