Do I have thyroid problems or something else? - Thyroid UK

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Do I have thyroid problems or something else?

Button11 profile image
35 Replies

Hi everyone I'm new here so bear with me :)

I'm 24 F and have been suffering on and off for years with symptoms and have been tested several times for thyroid (runs in fam) and anemia as I have a very pale complexion.

Since my grandad passed coming up to a year ago now my body has just been all over the place and just seems like it can't get back on track. I had blood tests last year (May) came back low b12 (118) and low vit D but everything else came back fine TSH- 2.75 AND T4-15.4. So had b12 injections (which made me feel quite ill, gave me upset stomach too) was told then it was just a temp, natural drop and I wouldn't need more after initial 6. Still felt not right so back and forth I went to just keep being told its my anxiety and IBS. I do have anxiety but after sessions for CBT i felt I was getting a grip on it but now it feels totally out of my control.

Anyway had more bloods taken feb (no thyroid test) that said my levels were fine except I had a marker by mean corpusc haemoglobin conc which was 313 whatever that means. Told IBS again

Went for private tests that came back wednesday said T4,T3 and TSH all fine,

T3 was 4.2 (3.1-6.8)

T4 was 14.29 (12-22)

TSH was 3.74 (0.027-4.200)

Still low D at 37 and low folate at 3.0 also my B12 has gone from 410 to 334 since end of feb to march 4th. Also had Thyroid Peroxidase anitbody test which came back at 81.1 an inconclusive reading as negative is below 60 and positive is over 100

I also dont have a physical lump in my throat but a constant sensation of one is driving me mad!

Any input would be appreciated (sorry its so long)

:)

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35 Replies
puncturedbicycle profile image
puncturedbicycle

Going by your results from last year it sounds like you could have early (subclinical) Hashimoto's. It would be good if you could edit your post (the little arrow under the text) and add your private results in a column w the lab ranges (the numbers in brackets).

Anxiety can be a hypo symptom.

Button11 profile image
Button11 in reply to puncturedbicycle

Thank you, I have updated the results I didn't put them in as the test said they were ok

puncturedbicycle profile image
puncturedbicycle in reply to Button11

They are within range but not fine. Your tsh is rising and now just in range, t4 falling and if you have antibodies you are likely to need meds before long. Are you supplementing b12, d, iron and folate? If they are all low you need to get that in hand and you may feel a bit better.

Button11 profile image
Button11 in reply to puncturedbicycle

I'm not supplementing b12 as the tablets aren't worth it they having noting in them and doctor said I don't need them. I have vit D now and then as i take probiotics with it in and ive only just found out wednesday about the Folate so i need to go back to see doctor to show him the results of the private test.

puncturedbicycle profile image
puncturedbicycle in reply to Button11

I don't think I understand. What do you mean they have nothing in them? Idk what your doc is talking about, if your b12 is low enough to require *injections* you will need to keep taking it and ideally they will want to know what is causing it.

Have they done tests for pernicious anaemia? I would go to the PA group here and do a post there. At your age being low in b12 can cause serious damage over time.

You will need to take an appropriate dose of d to raise your low levels (800iu a day won't cut it). Info here: imperialendo.com/for-doctor...

Button11 profile image
Button11 in reply to puncturedbicycle

I was told the tablet form of b12 you buy over the counter is pointless if you are b12 deficient they are just a waste of money as if you cant absorb it then your body cant take tablet form as the injection is straight into your system. They just said it was a natural decrease probably from the stress of everything and the initial 6 would sort it out and get it back on its natural path. Ive had lots of bloods taken for anemia and all been ok is there a specific test for pernicious anemia?

The doctor gave me the dose of vit D to get and i got them from the chemist but the also made me feel ill making me go loo and headaches and more pain. I'm going to take them from now on though as I know the probiotics aren't affecting it

shaws profile image
shawsAdministrator in reply to Button11

I have pernicious anaemia and also supplement with B12 tablets but they have to be sublingual methylcobalamin ones because, as you state above, my stomach will not absorb B12 but sublingually it is absorbed through tongue :)

Button11 profile image
Button11 in reply to shaws

Ah ok thank you I'll have to see what doc says. I'm just tired of going to be kept being told it's just IBS I understand I probably do have ibs but something else feels up

shaws profile image
shawsAdministrator in reply to Button11

You can buy B12 but make sure it's methylcobalami sublingual. Amazon have a selection and doctors don't usually prescribe tablets (in UK) and give B12 injections, quarterly, if someone has P.A.

bluebug profile image
bluebug in reply to Button11

What dose of vitamin D tablets did your doctor give you? Get the jar/bottle/packet out and look on the label it should state amongst the other measures a number that ends in "IU" or "international units". Please post that number.

The reason to do this is unfortunately in some NHS areas they under prescribe the amount of vitamin D3 you need. This is to do with cost and/or the fear that if you take a decent dose you will end up ill.

Clinical research has proven for people who aren't on other specific medication but have low vitamin D levels that a dose equivalent to 10,000IU daily won't harm you. Therefore if you are on any other medication please state it.

Button11 profile image
Button11 in reply to bluebug

I have boots vit d IU 1000 (25ug) but I also take probiotics that have D3 in but probably minute amounts. The doctor said to just go to chemist and get them I was never prescribed anything. I only take the pill, probiotics and anti acids which was ranatidine now been put on lansoprazole instead

shaws profile image
shawsAdministrator in reply to Button11

When hypothyroid (hypo means slow) everything slows down i.e. pulse, temp, digestion etc.

Lansoprazole reduces high stomach acid but we have the opposite usually. We have low acid so have to add acid so that our food gets digested properly rather than being undigested.

I don't think you can stop Lansoprazole instantly so enquire at the pharmacist. We, on the forum, use apple cider vinegar mixed with water or juice when having a meal. Or we take digestive enzymes with meals.

draxe.com/low-stomach-acid/

chriskresser.com/the-thyroi...

We have to educate ourselves, unfortunately, if we've to get well.

Button11 profile image
Button11 in reply to shaws

I feel like I have a bit of both like I'm back and forth all the time but I never put weight on but most the time I'm cold but as soon as I'm hot im hot like sweating then it passes comes and goes. I also have Raynaud's which has been worse lately

shaws profile image
shawsAdministrator in reply to Button11

I haven't put weight on at all either. Sometimes if we have one autoimmune condition we can get more, unfortunately.

verywell.com/cold-hands-col...

Hopefully when you get to an optimum dose of thyroid hormones your symptoms will ease off.

(I am not medically qualified) :)

Button11 profile image
Button11 in reply to shaws

Thank you. I need to go back to see the doctor with latest results and I'm going to keep going until I feel better

shaws profile image
shawsAdministrator in reply to Button11

That's good and I'm sure you will feel much better when you reach an optimum dose.

bluebug profile image
bluebug in reply to Button11

I forgot to say take vitamin D3 supplementswith with a meal with fat in preferably lunch as it can keep you awake if taken later. Magnesium is best taken at night as it has a calming effect but as long as you take some regularly don't worry about the time of day you can take it.

I should add doctors disagree about the amount of vitamin D you should take but all the medical staff I know, have spoken to have and the two that have treated me have no issues with those who have deficient levels taking large doses for a short period of 3-6 months AS LONG AS they are tested.

bluebug profile image
bluebug in reply to Button11

1,000IU is a maintenance dose for those with vitamin D levels around 100nmol/L who have been deficient/ insufficient before.

At your level and because you take other medication I would be on 5,000IU per day for 12 weeks then go down to 5,000IU every other day. I would then get tested after the 12 weeks to see where my level was. You will need to pay for a private test and one of cheapest is City Assays, who are an NHS Trust in the West Midlands. You want a level between 75-100nmol/L. Making sure your level doesn't go over 150nmol/L.

When taking vitamin D3 you should take vitamin k2-MK7 and magnesium. Either take magnesium citrate or other bioavailable firms, or use magnesium oil rubbed into the skin or take baths with epsom salts in. The reason for this is to keep your calcium levels stable and to increase absorption into the bones. You DO NOT need extra calcium as taking calcium supplements with vitamin D3 can lead to side effects such as kidney stones.

You won't easily find decent vitamin D3, magnesium and vitamin K2-MK7 on the high street so look on Amazon. In addition health food shops like Holland and Barett, and even pharmacies give the wrong advice. For example many magnesium supplements come with calcium and some pharmacists think that is OK but research in the last 10 years makes it clear you definitely should not supplement with calcium if your vitamin D level is low apart from some extreme cases. Calcium levels are strictly controlled by the body as it is used by every muscle and organ so if you have a low calcium level you need further medical investigation.

Button11 profile image
Button11 in reply to bluebug

Waw thank you. Can I take that even if my magnesium levels were ok?

bluebug profile image
bluebug in reply to Button11

Magnesium levels are also tightly controlled by the body so a test will rarely show you have an insufficient level even if you need more due to supplementing vitamin D levels. (You are likely to find other enzymes/markers go low instead.)

Also in the case of magnesium if you take too much you will end up with the runs. So yes it's fine to take a supplement.

Button11 profile image
Button11 in reply to bluebug

Thank you for your advise

Button11 profile image
Button11

The private ones? the most recent?

Button11 profile image
Button11

Really? Even though they are in normal level? The private lab didnt have access to my previous results

shaws profile image
shawsAdministrator in reply to Button11

Nowadays doctors don't know any clinical symptoms whereas before blood tests were introduced that's all the used - i.e. symptoms.

Normal just means we are within a certain range and doctors diagnose if our TSH goes above the range but have been told to diagnose only if TSH reaches 10 (in UK). Some doctors will prescribe if just over range.

This is how blood tests should be interpreted.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/about_...

Button11 profile image
Button11 in reply to shaws

Yeh my mom always says that what's normal to one person is not the same as someone else's normal. Thank you for the links

Button11 profile image
Button11

How do you self treat for thyroid?

silverfox7 profile image
silverfox7

Can you see another doctor in your surgery? He may be more clued up, your present one isn't helping at all have a look on the Thyroid Uk web site as there is a lot on information to help you understand more.

Button11 profile image
Button11 in reply to silverfox7

I've been to London and seen one there then we've recently moved to Midlands and I'm still in the same situation after seeing two or three different doctors so I feel like I'm going mad and making it up. I read about it but all the levels change all the time like my antibodies test every time I looked at results online it was saying it should be below 35 or something and mine said should be below 60 as it probably depends on the measurement used

bluebug profile image
bluebug in reply to Button11

Different labs use different ranges so you can't go on labs alone. However posters here - as this is a patient group- are well versed in reading lab results for specific things.

So you will find that while most doctors particularly GPs but including some endocrinologists disagree, the minority who are the open minded ones once you show you are both well informed - this includes understanding basic biology - and are engaged in a patient group will let you get on with it. Due to the risk to their own careers they are more likely to turn a blind eye then come out and fully support you.

bluebug profile image
bluebug in reply to Button11

You aren't going mad you forget that doctors in a particular area are more likely to go to the same medical schools and do their post graduate training in the same hospitals so think the same due to what they have learnt.

This is why sometimes being treated by students, those who have just qualified and foreign trained doctors can be helpful. The first two groups have not become jaded so symptoms and signs surprise them, and the second will have a different life experience.

Button11 profile image
Button11 in reply to bluebug

Yeh I've seen quite a few different gps Midlands and in London as we lived there for a short period but I'm not going to stop until I feel better because it's pretty depressing feeling rubbish all the time as many here know

bluebug profile image
bluebug in reply to Button11

Oh one thing to warn you about now never tell a doctor you are depressed.

Why?

They will attribute all your symptoms to your mental health and ignore your physical symptoms.

They will then put you on different doses of anti-depressants then if that doesn't work they will either ignore you, refer you for counseling or even refer you to a psychiatrist.

People with thyroid issues, autoimmune diseases and even nutrient deficiencies all frequently have depression and low mood. It is a way of the body telling the mind something is wrong.

Button11 profile image
Button11 in reply to bluebug

I know I have anxiety on my records and they already do that but I refuse to take medication that's not going to resolve anxiety long term and is just a doping agent

Button11 profile image
Button11

I went to see my doctor he told me the private bloods were a waster of time (even though they found I had low folate and still lowD) but the PAT was a wasted pointless test as TSH, T3 and T4 were all fine and normally they don't even test T3 or T4 unless tsh is off. I'm so confused how are my levels normal but but antibodies test wasn't? Surely it would have been in the normal category if nothing was wrong?

Button11 profile image
Button11

Thank you!

he now just thinks it's anxiety and keeps mentioning medication but I just keep refusing telling him even if it is anxiety taking tables does not solve the root problem ah!

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