Help with results please.: Hi, I have recently... - Thyroid UK

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Help with results please.

2hope profile image
39 Replies

Hi,

I have recently been struggling with severe fatigue, weight gain and a puffy face. My GP has prescribed me 125mg Levothyroxine but wasn’t happy about it because my TSH was very low and therefore she wanted to reduce me to 100mg. I was adamant that I don’t want to go any lower so she kept me at 125mg.

Recently, I have increased my dose alternating between 125/150mg because I thought my GP won’t increase and I was feeling the hypo symptoms, weight gain and fatigue. I have gained about 10kg on the last 12 months. However, despite the increase in my dose I haven’t felt any better.

I got my bloods done via Medichecks and the results have just come in. The test was done on 30/01/2023 at 07:20 and the last dose of levothyroxine was taken 24 hours prior to test. However, the tests have given me a scare, I feel I have just messed up by increasing my dose, but the only thing I am unable to understand is that I haven’t lost a single pound of weight and I am not having any palpitations.

The doctor at Medichecks has wrote that:

“In the presence of a raised CRP (inflammatory marker), the ferritin(meant to reflect iron stores) reading isn't always accurate. It can appear higher than your iron store level really is. Consider rechecking ferritin in a few months time, once the CRP has settled. Since your ferritin here is entirely normal, it is unlikely that with such a small rise in CRP that you ferritin would be lower than normal but the only way to be sure is to recheck in a few weeks.”

I would appreciate any advise or support with my results. Many thanks.

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2hope
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39 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Looking at your old reults you seem to be a good converter just your TSH tends to be on the low side. Doctors don't like this and will always try and reduce Levo.

Do you have the last results from your previous Levo dose?

Have you been supplementing at all? Often low vitamin levels mean our thyroid hormone doesn't work properly.

2hope profile image
2hope in reply to Jaydee1507

Thank you for replying.

I had my last results in 04/10/2022 and my GP only shared my TSH which was 0.02

Previous to that my results in 13/01/2022 was TSH 0.01, T4 - 14.8, T3 - 5.80

Jaydee1507 profile image
Jaydee1507Administrator in reply to 2hope

So whatever the dose was on 13/1 was OK.

Have you ever been hyperthyroid? Sometimes TSH stays put.

I think you should reduce back to where you were and start a vitamin B complex. That would bring your low folate and low B12 up and help your body to use the hormones you have there.

2hope profile image
2hope in reply to Jaydee1507

i was on 125mg at the time but GP wasn’t happy even then. I will start with B Complex, do you know any good ones I can purchase ?

2hope profile image
2hope in reply to 2hope

I have never been Hyperthyroid x

Jaydee1507 profile image
Jaydee1507Administrator in reply to 2hope

You need to explain that TSH is a pituitary hormone and not a thyroid hormone. Your Thyroid hormone of FT4 is well within range. Explain that you understand the risks of a TSH below the reference range of osteoporosis (actually thin evidence of this) and accept the risks. I'll try and find the NICE quote for you.

This B complex is good and reasonably priced. amazon.co.uk/Yipmai-Liposom...

2hope profile image
2hope in reply to Jaydee1507

thank you so much for you help. I really appreciate it x

Jaydee1507 profile image
Jaydee1507Administrator in reply to 2hope

This wasn't exactly what I was looking for but should also work.

healthunlocked.com/thyroidu....

2hope profile image
2hope in reply to Jaydee1507

Many thanks

Jazzw profile image
Jazzw

First of all, don’t be scared. You’re a little bit over medicated by the looks of things but not so much that you’ve done yourself any damage. Hugs xx

Looks like 125mcg daily was probably a better dosage for you than 137.5mcg daily, so you might want to think about going back to 125mcg.

I think many of us here sometimes find ourselves trying to blame our thyroid hormone levels for everything else that’s wrong but looking at your other posts what you’re describing isn’t a new thing for you. So I wonder whether it isn’t actually a thyroid hormone related issue. It could be something else entirely.

Can I ask how old you are? Could it be perimenopause?

Have you a had a diabetes check recently?

2hope profile image
2hope in reply to Jazzw

thank you for your kindness.

I am 38 years old and no I have not been tested for diabetes. Should I get it checked?

Jazzw profile image
Jazzw in reply to 2hope

It’s definitely worth getting checked out. Tiredness and weight gain are definitely a feature of Type 2 diabetes.

2hope profile image
2hope in reply to Jazzw

I will talk to my GP, it’s so difficult to get them to test unless they feel I need it. When I have asked in the past they just say why do you feel you need it tested.

Jazzw profile image
Jazzw in reply to 2hope

Doctors, eh? :-o It’s maddening. We want to be tested because we’re worried about feeling under the weather all the time, not because we enjoy being stabbed with needles.

If you get no joy with the doctor there’s a Monitor My Health test that’ll do HBA1C—which will give you a decent idea of whether everything is ok.

2hope profile image
2hope in reply to Jazzw

I know I wish these doctors understood!! I will try with my doctor and if not I will go for the Monitor My Health test x

Jazzw profile image
Jazzw

Just to say, regarding the slight raised C reactive protein result—that’s usually a sign of inflammation somewhere in the body. Could be anything from you having a cold to back pain—anything that’s inflamed and possibly painful.

It’s only slightly raised so unlikely to be a big problem but something to keep an eye on it’s repeatedly raised with no decent explanation.

2hope profile image
2hope in reply to Jazzw

I have been feeling extremely tired and had a temperature a few times but nothing else. I wake up with puffy eyes and eye bags .

Jazzw profile image
Jazzw in reply to 2hope

So something’s not right, eh? A temperature is a sign of infection so something is inflamed, almost by definition. Could be absolutely anything, from IBS upwards.

Feeling tired all the time is just awful. I know you’re a bit young but it might be worth asking about perimenopause, just to see if dropping female hormones has anything to do with this. I’m 53 now but definitely had peri symptoms from 42-ish onwards. Hit menopause with screeching brakes at 47, a year after my partner died. I think my body just closed the shop, LOL.

2hope profile image
2hope in reply to Jazzw

I agree with you, my periods are very light and I was thinking if discussing with my GP. You were young when menopause hit! I thought it would happen in the fifties. It’s strange how trauma can affect our body.

I am so struggling with the tiredness, I most days fall asleep just lying on the sofa, can’t keep my eyes open for long .

SlowDragon profile image
SlowDragonAdministrator

Which brand of levothyroxine do you take

Do you always get same brand

Your results show you are taking too much levothyroxine

This can make you feel as exhausted as too little

How long have you been taking 137mcg

Reduce back to 125mcg daily

Retest in 8-10 weeks

Meanwhile improving low B vitamins with good quality daily vitamin B complex

And get full iron panel test for anaemia

GP unlikely to agree…..but you could ask

Otherwise test via Medichecks

Medichecks iron panel test 

Test early morning and just water before test

medichecks.com/products/iro...

High CRP (inflammation) can cause raised ferritin levels despite low iron

2hope profile image
2hope in reply to SlowDragon

I never get the same brand of Levothyroxine. It’s a mix of Accord, Northstar or Wockhardt.

I have been taking 137 for at least three months I think. I will go back to 125 and retest in 8 weeks. .

Do I just take a b complex or also a b12? If so can you recommend a good quality b12.

SlowDragon profile image
SlowDragonAdministrator in reply to 2hope

You don’t need B12 as well

Northstar 50mcg and 100mcg are Accord brand

Northstar is not going to be available anymore as of this month

approximately how much do you weigh in kilo

Even though your antibodies are negative….you could still have autoimmune thyroid disease

ever high antibody test in past

20% of Hashimoto's patients never have raised antibodies 

healthunlocked.com/thyroidu...

 

Paul Robson on atrophied thyroid - especially if no TPO antibodies 

 paulrobinsonthyroid.com/cou...

Have you tried strictly gluten free diet?

Or dairy free

2hope profile image
2hope in reply to SlowDragon

I was tested for coeliac but was negative. I haven't tried gluten free or dairy free diet. How long do you have to be gluten free and dairy free to notice any difference?

The atrophied thyroid article looks interesting, never heard of it. Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to 2hope

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.

Most common by far is gluten.

Dairy is second most common. 

 A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

Hashimoto’s and leaky gut often occur together

Both dairy and gluten are inflammatory foods

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link) 

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

SlowDragon profile image
SlowDragonAdministrator

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

Thorne currently difficult to find at reasonable price, should be around £20 

If you want to try a different brand in the meantime, one with virtually identical doses of the ingredients, and bioavailable too, then take a look at Vitablossom Liposomal B Complex. Amazon sometimes has it branded Vitablossom but it's also available there branded as Yipmai, it's the same supplement

amazon.co.uk/Yipmai-Liposom...

or available as Vitablossom brand here

hempoutlet.co.uk/vitablosso... &description=true

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement

2hope profile image
2hope

I checked Vitablossom Liposomal B Complex as recommended by another member but not sure if they are vegetarian. I can’t seem to find thorne basic b on amazon

StanleyThyroid profile image
StanleyThyroid in reply to 2hope

I just ordered thorn from iherb. They have a 20% new customer promo so that should help. Unfortunately none of the good vitamins are a bargain.

2hope profile image
2hope in reply to StanleyThyroid

thank you I will have a look.

Anthea55 profile image
Anthea55

Many of us have a suppressed TSH. Nothing wrong with that, but many doctors are out of date. See this link to the Thyroid UK website, where it shows the 'myths of hypothyroidism', such as the myth that a suppressed TSH leads to osteoporosis.

thyroiduk.org/further-readi...

It is also really important to have your nutrition tested. You should then take supplements based on those results. There is no point in supplementing something where you are not deficient. Don't take multivitamins because they don't contain the best ingredients and have them in the wrong proportions. Thyroid medications may not work well if you have deficiencies. Your GP should be able to test some of these.

What brand of levothyroxine do you take, and do you always get the same brand of levothyroxine? What suits one person may not suit another.

Weight gain is a problem and may not reduce until your thyroid meds are optimum. Please don't try to diet to reduce weight. You need to eat a balanced diet so that you absorb vitamins and minerals.

Sorry - it's getting too late and I'm rambling on!

2hope profile image
2hope in reply to Anthea55

thank you for your response. Your not rambling at all, it makes perfect sense.

I don’t take multivitamins, used to until I came across this page.

I have days where I feel I need to be careful what I eat and then I have days where I just eat. It is a struggle, especially the weight gain and the fatigue.

McPammy profile image
McPammy

if my TSH is suppressed I feel terrible. Only feel good when it’s about 1.00. My T4 and T3 levels are usually mid range when doing a blood draw where I abstained from taking my medications. I’m on levothyroxine plus liothyronine combined. Your TSH looks too suppressed and maybe you’d feel better with a reduction in your medication. When I’m over medicated I feel very tired, heavy, low heart rate and brain fog. It’s the same if under medicated too. I function much better when levels and TSH are similar to a healthy persons = TSH around 1.00. Maybe give it a go.

2hope profile image
2hope in reply to McPammy

I think the same issue might be happening with me. Once I reduce the medication for 6/8 weeks and take my b vitamins, is there a chance of my TSH moving out if suppression?

McPammy profile image
McPammy in reply to 2hope

maybe. It all depends on each individual really. Lots of people seem to cope ok on suppressed TSH therefore high levels of T4 or T3 but I just can’t cope being suppressed myself. It’s trial and error. I tweaked my levothyroxine dose down very slightly but kept my liothyronine T3 as prescribed. It worked out well for myself. I’m on liquid levo so it makes life easy if you want to tweak it. You can always split tablets though with a sharp scalpel knife. It may take a shorter time than 6/8 weeks but 6/8 weeks is the guide on here and by Drs.

Yeswithasmile profile image
Yeswithasmile

it does look like you’ve had plenty of comments 😊 but I thought you might like one more!

Firstly if they were my results I’d feel awful. I need my ft4 around 17 but no higher than 18. I would guess that’s why you period is light too. When I’m overmedicated I’ll skip periods.

Secondly I would like to mention that over medication symptoms can be the same as hypo symptoms. Also different brands can be absorbed differently in the body so one brand may be far more effective than another. I have experience of this. When we change dose and feel symptomatic it can be difficult to know if we are under or over medicated at times. I also get mild anomalies on blood tests.

Lastly my tsh is surpressed and has no relevance to how I feel. I’m one that is happy for it to be surpressed. I go purely by my ft4 and ft3. Too high/low ft4 seems to be more responsible for my main symptoms (including weight gain) than my ft3. However the other symptoms I get including fatigue/asthma type symptoms, etc seem to be related to my level of ft3.

I think if I were you I would drop back down for a while. I then may consider adding in an extra dose because on 125mcg your ft4 level would still make me very symptomatic. However the extra 25mcg you took due to alternating was obviously utilised very well by your body. I may split a pill to take another 12.5mcg just a couple of days a week to see if that was enough.

Anyway just my thoughts. Good luck.

2hope profile image
2hope in reply to Yeswithasmile

thank you so much for sharing your thoughts. I think I have been confused between hypo and hyper symptoms. I just assumed tiredness, weight gain are all hypo and then I wasn’t having any palpitations so I never thought of being overmedicated.

I think I will take 125mg for 6 weeks and then get tested. If the levels aren’t right, I might experiment with the extra 12.5mg a couple of days a week.

Thank you again

tattybogle profile image
tattybogle in reply to 2hope

just an FYI on overmediction and 'palpitations' :

i was overmedicated , symptoms crept up on me over many months , all sorts of stuff ,bladder issues , kidney area pain, being a bit clumsy , very jumpy if startled, over sensitive to noise , catastophising and unable to turn brain off, none of which anyone thought was related to overmedication with thyroid hormone.

I had absolutely no sign of palpitations or noticeable increase in heart rate whatsoever . but with hindsight it was definitely overmedication, and a slightly lower dose improved all these thing over the next few months. They didn't all improve at the same rate , some improved gradually over months, some improved within weeks .

I think we all hove our own rather individual 'profile' of what symptoms we get with slight overmedication and slight undermedication,, and it can be fiendishly difficult to tell the difference .until we know ourselves very well and have experienced both.

if it is slight overmedication that is making you feel rough ,, then you do need to give a slightly lower dose a trial for 'long enough' ... 6 weeks is the bare minimum of time to see how a lower dose will feel once it's settled in .

If you have been overmedicated you can expect the first 4/5 weeks on a lower dose to feel a bit undermedicated (a bit like a pendulum swings back too far in the opposite direction beffroe settling in the middle) ~ so make a note of how you feel each week but other than that, try to ignore how you feel for the first 4/5 weeks ,and then pay more attention to how you feel from week 5 onwards.

2hope profile image
2hope in reply to tattybogle

thank you for your response. I do appreciate the support that is given on this group. I will definitely take things on board.

Yeswithasmile profile image
Yeswithasmile in reply to 2hope

No problem. It is difficult to know and can be a surprise. I see tattybogle has replied below and has laid it out expertly. We do all seem to have our own ‘profile’. I get pain and palps but that’s just how it is with me. I would add though that I also seem to have a worse reaction being overmedicated on differing brands. I think that’s just to make the whole thing even more complicated and difficult to remedy 🤷‍♀️ and quite frankly it’s getting on my nerves! Lol.

Locky1971 profile image
Locky1971

My TSH is always supressed at 0.01. Now matter what amount of medication I'm on.My Endo is actually quite good and has added to my notes don't dose on TSH results. Although I do feel better on T4, T3 combo or Armour.

Hope you feel better soon.

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