New and feeling confused: Hello everyone, I am... - Thyroid UK

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New and feeling confused

GuineaPig25 profile image
15 Replies

Hello everyone,

I am new to this, and a little bit overwhelmed and confused after reading lots of different information. I was hoping for a little advice if possible.

I was started on Levothyroxine 50mcg a week ago by the GP. My Dr said I have subclinical hypothyroid and said it would be a good idea to try medication as I have been feeling very fatigued, muscles achy and quite dry, sore eyes and skin.

The following are my most recent blood tests results. The thyroid ones were also checked 3 months ago and were almost the same levels as below. I paid privately to have my thyroid antibodies and T3 checked and also my vitamin D and active B12 but the others are all through my GP.

TSH 5.9 (0.38-5.33)

T4 10.5 (8-18)

T3 3.8 (3.1-3.6)

TPOab 570 (>34)

TpAb 379 (<115)

Total Chol 5.03 (0-5)

Vitamin D 38 (50-175)

Active B12 111 (37.5-150)

Serum total B12 238

Ferritin 5 (<15 absolute def)

Folate 6.2 (3.8-26.8)

(not anemic at this point but levels of hgb /hct low end)

Since starting medication a week ago I have now read that subclinical hypothyroid is sometimes over treated, and that the thyroid can sometimes correct itself and that by treating it you can cause more harm than good. So I'm now feeling anxious about this. Perhaps I should have waited longer to see if things improved once I corrected by other deficiencies. I am also confused by definitions - I have subclinical hypothyroid but elevated antibodies. Does this change advice regarding receiving medication?

Also I have read that by taking the medication the thyroid stops working on its own - is this true?

I am also perimenopausal - could this have caused the abnormalities in my thyroid antibodies? Are there any other things that could cause elevated antibodies? 

I was initially relieved when my GP prescribed me levothyroxine as I have felt so tired for a while now but after reading too many things on the internet (!!) I am now worried that I have acted too quickly. Is there a good book that would help me understand things better as I am getting overwhelmed by lots of conflicting sources on the web. I joined FB groups for iron deficiency and vitamin D wellness but there is so much information and it is also conflicting that its off putting.

Thank you in advance for any help and insight! Sorry for writing so many questions down in one go.

Best wishes to all.

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GuineaPig25
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TiggerMe profile image
TiggerMeAmbassador

Welcome aboard, try not to worry you have landed in a sane space 🤗

I'd suggest avoiding FB for advice as it isn't regulated and all sorts of extreme and utter nonsense gets spouted!

So, your raised antibodies shows that your body is confused and has started attacking your thyroid, probably been doing it for years, childbirth, trauma and stress can trigger this but it only gets noticed when things start to fail and often the thyroid is around 90% destroyed when this happens.

Possibly if you'd known about it 20-30 years ago and gone gluten and or dairy free this may have slowed the progress but it would have got there in the end 🤷‍♀️

It is daunting thinking you will be on this for life but as with HRT you are just replacing what is missing it isn't really a 'drug'

Your heightened anxiety is one of the many effects low thyroid and sex hormones can have on you just to make life really awful 😕 but once you get things balanced you'll be skipping around again

Your Vit D, ferritin and folate are all terribly low which adds to the hollowed out feeling, your active B12 is pretty good which is surprising as your total B12 is low

Has your Dr given you anything to tackle these deficiencies?

p.s. certainly look into HRT as peri can be utterly miserable and a little oestrogen balanced with thyroid hormones is a big help

Sleepman profile image
Sleepman

As per Tiggerme I have found this a sane but also a safe place.

Sorry I do not know about recovery apart from 2 results 3 months apart is the check to see if it is present when TSH between 5 and 10.

Your post shows you are picking things up well which is not easy when you are suffering and fatigued. Take it easy for a while. This forum is generally the strugglers who do not convert T3 well or absorb T3 well, don't be spooked, say 85% are OK. If you do have issues, I have found this place to be rigorous and careful/sensible.

Levo /T4 is slow to get into your system, so nothing much will happen fast. Next bloods in say 8 weeks to get a dose increase. Your T3 and T4 levels are low in range showing you need levo. Good you are not having any reaction to the levo, a few do.

My vit D was like your, Doctor gave me a small dose, but I went larger after reading on here. Looks for supplement D3 with K2. I take 4000IU. Some take spray which I started on but I now take tablet. Your stomach may not absorb well is the idea behind the spray.

I take Igneus B complex methylated, for folate and B12 support. Just multivitamins are not recommended by the forum. I do not know about Ferritin.

A pretty common issue is to have problems with gluten and gluten free helps. Look at Slowdragon excellent informative posts on this sort of stuff. (Some Dairy also)

SlowDragon profile image
SlowDragonAmbassador

welcome to the forum

Anxiety is extremely common hypothyroid symptom…..it does improve

Being hypothyroid CAUSES low vitamin levels extremely common

What has GP prescribed for your low vitamin levels

Vitamin D 38 (50-175)

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

NHS Guidelines on dose vitamin D required

panmerseyapc.nhs.uk/media/2...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAmbassador

Ferritin is very low

Are you vegetarian or vegan

Ferritin 5 (<15 absolute def)

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

GP should be doing full iron panel test for anaemia….have they?

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 3-5 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

monitormyhealth.org.uk/anae...

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

GP should also do coeliac blood test at diagnosis of autoimmune thyroid disease (hashimoto’s)

as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

I would avoid Facebook support groups

FallingInReverse profile image
FallingInReverse

Ferritin 5 (<15 absolute def)

(not anemic at this point but levels of hgb /hct low end)

Doctors are taught to rely on a CBC to diagnose anemia. This is entirely insufficient but almost none will know or care about that.

Iron related measures on a CBC lag after deficient circulating iron and ferritin levels. CBCs only need to be checked every 6-12 months when it comes to iron.

You can have iron deficiency without anemia. And with that ferritin are most likely headed for anemia in 3-12 months if left on its own.

You should get a full iron panel if you want to be able to effectively treat what might be dire circulating iron:

Iron

Total iron-binding capacity (TIBC)

Transferrin saturation

Ferritin

High Sensitivity CRP (CRP-hs)

Never supplement iron without a full iron panel. Iron is toxic in excess over time and causes irreversible damage to soft tissues and organs.

GuineaPig25 profile image
GuineaPig25

hi all,

Thank you so much for your replies. I am going to look through all the replies over the next day and appreciate the level headed responses!

I should have added my iron panel which I have done already.

Hgb 126 (120-150)

Hct 0.367 (0.37-0.35)

Then from medichecks blood work

Iron 18.8 (5.8-34.5)

Tibc 64 (45-81)

Transferrin saturation 29.5 (20-50)

Uibc 44.8 (24.2-70.1)

I’ve started iron bisglycinate 35mg, as well as vitamin d k2 (I think it’s 5000), also magnesium taurate at night. So many pills and lots of rules to adhere to! My dr wants me to check all my levels again in 3 months. Hopefully things will have improved.

It’s really interesting what you’ve mentioned about diet as in the last few years I’ve found it hard to tolerate ice cream and gluten so sounds like this is all linked.

Really appreciate the advice. Thank you

TiggerMe profile image
TiggerMeAmbassador in reply toGuineaPig25

Excellent, you are already moving in the right direction, you need to add in a methylfolate, then you could swap to a B complex.... and I need to flag up that Vit D really wants to be one that also contain K2, you could buy a second one and add it to your current one? I'd suggest taking 10,000iu daily for a couple of weeks as a loading dose and then drop back to 5,000iu

Here is a handy calculator.... you are aiming for 100-150nmol/L

grassrootshealth.net/projec...

Thankfully your iron isn't bad at all, just your ferritin, Vit C helps with uptake 🙂

tattybogle profile image
tattybogle in reply toGuineaPig25

just tagging FallingInReverse SlowDragon TiggerMe for you , otherwise they may not notice your reply/ iron panel :)

also adding these , they may come in handy for you later on.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.

"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

healthunlocked.com/thyroidu... the-shoe-size-analogy.

healthunlocked.com/thyroidu.... list-of-references-recommending-gps-keep-tsh-lower-in-range

GuineaPig25 profile image
GuineaPig25

thank you tattybogle, I don’t know how to tag 🤭 really interesting links - definitely helping me get my head round it all when written in that way.

And thank you TiggerMe - I will have a look at the calculator for sure. My vitamin d does have k2 in it as well so that’s good, thank you for the advice. It’s the sports research one which is going down ok so far!

I’m going to have a look for methyl folate too. Appreciate your advice. My gp didn’t mention taking that one.

Originally my gp didn’t want to test vitamin d or folate or b12 so I did it privately but now I think she’s happy to recheck in 3 months as some were out of range.

I appreciate all the links and will read it all. I was getting stuck on the fact it’s sub clinical and there seemed to be lots suggesting this kind of problem often righted itself but it’s making more sense I think now.

Thank you all, some reading to do, if I can stay awake 😂

TiggerMe profile image
TiggerMeAmbassador in reply toGuineaPig25

Couple of pointers, you need to press the reply button for someone to be notified and if you want to tag someone start with a @ and start typing their name and a dropdown list should appear for you to select the right one tattybogle which will give them a heads up

Glad you are feeling a little more reassured 🤗

GuineaPig25 profile image
GuineaPig25 in reply toTiggerMe

Got it! Thank you TiggerMe ! Best wishes to you

FallingInReverse profile image
FallingInReverse

GuineaPig25

For iron, it looks like:

|

- early-stage iron deficiency - based on iron at only 45% through range, and we target 55-70%…, but ferritin is a hard 5— as low as I’ve ever seen it. Together it means you have barely enough iron in your blood right now, but with none stored this easily becomes full blown anemia (defined by how impaired your red blood cell situation is as seen in your cbc measures).

|

Right now your Hgb and Hct are borderline very low meaning oxygen is not getting around as it needs so may contribute to feeling breathless or brain foggy. Not great and with your iron/ferritin as it is, most likely going to get worse. Remember the life of a red blood cell is about 90 days, so the low iron/ferritin now will show up in several months. Likewise with improvements.

|

You should add things like MCV, MCH, MCHC, and RDW to your cbc panel and get one every 6-12 months. No one iron measure tells the whole story - ultimately all together these will also help interpret whether it’s your iron deficiency that’s the biggest problem in your anemia or if it’s your b12/folate limiting your red blood cells.

Also - start getting a CRP-hs anytime and at the same time as you get ferritin tested.

GuineaPig25 profile image
GuineaPig25 in reply toFallingInReverse

Hi FallingInReverse , I did have a full cbc done with my gp. The results were

WBC 4.7 (4-11)

RBC 3.96 (3.8-5.30)

MCV 92.5 (83-100)

MCH 31.8 (27-32)

MCHC 344 (310-350)

Platelet 288 (150-400)

RBC width 12.3 (11.5-15.5)

She didn’t mention any of these results so I wasn’t sure what to make of them. Hopefully when I get retested she will do the same full cbc like this. I haven’t heard of a CRP hs - I will look that up, thank you.

I have been feeling very very tired but I’ve had low ferritin for some time, never getting above 16 in the last 7 of so years. I have a terrible memory and do get short of breath so that makes sense. It was never flagged as something to be overly concerned about as I only became anaemic at one point in those 7 years. Was told it was likely from menstruation 🤷‍♀️ and memory issue from perimenopause. Realising now I need to really focus on getting my levels up. I’m not vegetarian or vegan so it’s odd it’s so low.

A couple of years ago I believe the dr tested for coeliac as I was having a lot of nausea and pain in my stomach but the blood test was negative. Would it be worth doing another? I’ve definitely felt better since limiting gluten but haven’t cut it out completely.

Many thanks for your insight, much appreciated.

TiggerMe profile image
TiggerMeAmbassador in reply toGuineaPig25

Many of us use threearrowsnutra.com/en-uk/...

Heme is available to absorb straight away so higher uptake than the others and easier on digestion

Just in case, buying 3 gives free postage which takes 7-10 days, FRANKLIN saves another 10%

arTistapple profile image
arTistapple

Its difficult to differentiate between when a ‘subclinical’ situation can resolve itself and when not. This will become more important if indeed it does not resolve and you choose not to medicate.

Presumably if it’s going to resolve you will get a heads up from your (proper) blood tests. TSH, FT4 and most important, the one doctors never test - T3. You can get these done privately relatively cheaply.

There is quite a bit of research showing subclinical should garner much more attention than it gets presently. Another post this morning does discuss it to some degree. I will look for it and let you know which post.

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