Hypothyroid: Hi all, I have been hypothyroid for... - Thyroid UK

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Hypothyroid

ZCJH4 profile image
29 Replies

Hi all,

I have been hypothyroid for 4 years now. Dosage between 25mcg to 75mcg. I have always been within the 'normal' range, acording to the TSH and T4 blood test results. My T3 has never been tested as Iv been told it is pointless as there is no medication to treat it?

I gave birth, to my son, 7 months ago and I haven't felt 100% since. Some of my symptoms include: No sex drive, Headaches, Constantly tired/no energy, Anxiety/nervous, foggy brain/poor memory and acne. That's not all of them.

At my previous appointment they prescribed me a beta blocker, propranolol, for my anxiety. I'm pretty nervous to take it as I don't want additional issues with my thyroid and there isn't much information regarding this. Is anyone familiar with a mix of levothyroxine and propranolol?

Also does anyone have advice regarding pushing for more to be done with their thyroid symptoms? Iv moved to another GP practice, and I'm making my way around all the doctors but none of them seem interested!

Need more energy for my son. I don't want to slowly fall into depression :(

Any help or advice would really be appreciated! Xx

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ZCJH4
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29 Replies
Clutter profile image
Clutter

Welcome to the forum, ZCJH4. Normal is a very broad range and isn't the same as having optimal levels.

Ask your GP receptionist or practice manager for a printout of your results with the lab ref ranges (figures in brackets after the results) and post them in a new question and members will advise whether you are optimally medicated.

Your GP is woefully ignorant about thyroid treatment. There is every point in testing FT3 if a patient remains symptomatic when TSH and FT4 are 'normal'. If FT3 is low, and it is low T3 which causes hypo symptoms, the patient is either undermedicated on Levothyroxine or is not converting T4 to T3 well and may need Liothyronine (T3) added to Levothyroxine. Not all GPs can prescribe T3 without recommendation from an endocrinologist.

If your GP won't order FT3 you can order private tests from Blue Horizon or Genova via thyroiduk.org.uk/tuk/testin...

ZCJH4 profile image
ZCJH4 in reply to Clutter

Thank you for your reply! I am unable to receive copies of blood test results but I have book another appointment on Friday with another doctor this time so il ask to write the results down at least. Iv heard about people finding it hard to find a doctor in London (where I live), to do a t3 blood test. Do you think it would be a better option to see a endocrinologist? What grounds do I stand on in asking for one? Does there need to be specific reasoning? I only ask as because they claim I am in 'normal' range I doubt they will want to refer? X

Clutter profile image
Clutter in reply to ZCJH4

ZCJH4, The Data Protection Act entitles patients to their test results. Ask the receptionist, practice manger or GP to print off your recent results with the lab ref ranges.

Labs usually decline to test FT3 unless TSH is suppressed <0.03. They're really looking for evidence of hyperthyroidism ie low TSH + high FT4 and high FT3 rather than low FT3 in hypothyroid patients.

Ask your GP to order the FT3 test but if refused the only way to find out your FT3 is to order a private test via the link I posted above.

Your grounds for asking for referral to an endocrinologist are your continuing symptoms despite thyroid bloods being in normal range.

ZCJH4 profile image
ZCJH4 in reply to Clutter

Thank you very much. Defiantly something I will be bringing up on my next appointment! X

SlowDragon profile image
SlowDragonAdministrator

Hi

Yes I take propranolol AND Levo. If I just take the Levo I don't function. But if I also take the propranolol (4 x 10mg each day - at 7am, noon, 6pm and 10pm) then I can function completely normally. No idea why it works, but it does for me.

When I was just on Levo I could barely get out of a chair. On Levo AND propranolol I can cycle, garden, go to gym etc etc

I think of it as the Levo being the petrol to get me functioning and the propranolol as the brakes to stop going too fast

I take 125mcg Levo (always same brand - Mercury Pharma) and take it at bedtime.

Over past 20 years I have tried other options (T3, Armour, adrenal support etc etc) - all was worse for me.

I went back to being treated by eminent NHS endocrinologist, after trying private "alternative treatments"

ZCJH4 profile image
ZCJH4 in reply to SlowDragon

Thanks for your reply. I have been looking into propranolol and I do have asthma and it advises against taking it if you having breathing problems. I have made an appointment again for Friday, with another doctor, to discuss it further. I'd love to feel normal again lol fingers crossed I can take it! Sounds like it's working for you. Do you recommend asking to see a endocrinologist? What can they do for you? X

SlowDragon profile image
SlowDragonAdministrator in reply to ZCJH4

Yes you can ask to get referral to endocrinologist. Try to get one that is thyroid and adrenal specialist, not just local hospital one that deals with diabetes. Try to get referal to a specialist endocrine centre not just local hospital - search on web for one in your area of country.

I think if you have asthma propranolol may not be good idea - see what Dr says

ZCJH4 profile image
ZCJH4 in reply to SlowDragon

Thank you very much. I will look into seeing an endocrinologist x

Clutter profile image
Clutter in reply to ZCJH4

ZCJHA, new research says low dose beta blockers may be safe for asthmatics pulmccm.org/main/2014/asthm...

Angel_of_the_North profile image
Angel_of_the_North in reply to Clutter

However, my cardio said beta blockers would make me feel worse, so ... and many asthma meds are beta agonists so it doesn'tmake a lot of sense to take both.

Gyon profile image
Gyon

As Clutter said it could be low T3 and yes, it can be treated. I went to test privately and went to gp with result. it was clear i wasnt converting to t3. do make sure you test adrenals (saliva 4 point test). He then referred me to an endo . I am now supporting my adrenals (low cortisol can also cause feeling hypo) and just got the letter that endo prescribed me low dose t3 along my t4. I get prescription today, so hopefully it will help. so there is hope , but sometimes you have to pay for it to get you on the road. good luck. I know how hard it is with a baby. been there. x

ZCJH4 profile image
ZCJH4 in reply to Gyon

Thank you for your reply. Curious to know what the saliva 4 point test is for? I hope the t3 works for you. Iv had a hard time finding a doctor that will listen, I'm glad you have been able too! Best of luck! X

Gyon profile image
Gyon in reply to ZCJH4

its a saliva test to check adrenals. you need to provide 4 spit sample in morning, lunchtime, mid afternoon and before bed. Ideally cortisol should be the higher in the morning then go down slowly till bedtime. REsult can indicate adrenal fatigue which can cause symptoms like hypo. I ordered mine from purehealthclinic.co.uk/ the lady there very knowledgeable as well. I did take result to endo, but he did a nother test and ruled out adrenal insufficiency. for NHS adrenal insufficency is at the point where your adrenals are dead. :S but plenty of supplements to help you. suggest you to join fbAdrenal Fatigue Recovery and Hashimoto 411. I learnt so much from them!

Gyon profile image
Gyon in reply to Gyon

also adrenal issues can cause your t4 to convert into Rt3 instead of active T3. could be one problem why t3 is low. When the adrenals are exhaused the body steps on break and creates more RT3 to slow you down. vicious cycle

ZCJH4 profile image
ZCJH4 in reply to Gyon

Thank you, that's very interesting. I will definantly look more into that! X

Makes me very angry, reading your story, it doesn't sound as though you have received adequate care.

Clutter is ace. But also, you have just had a babe, I am going to ask what I always ask, what is your serum ferritin level? Have they tested that? Did they keep an eye on your iron levels during the pregnancy? And well done for keeping going with the thryoid and the baby - how is the baby? Male or female?

During pregnancy, did you feel overwhelmingly tired? Were you unable to drink coffee or tea, and did fluroide toothpaste make you throw up for instance? Did you feel constantly hungry and constantly sick all the way through it?

ZCJH4 profile image
ZCJH4 in reply to

Thank you for your reply. I don't believe Iv had my serum ferritin level checked. They don't give copies of blood test results either. They checked my iron during pregnancy and I am anaemic. I take iron tablets but it only tends to help with being light headed. Strangely enough when I was pregnant I felt so much better than not being pregnant! I didn't suffer with vomit/nausea and I always tend to eat a lot anyways! I need my energy from somewhere I guess lol. It feels like my hormones are out of whack and with my body being full of hormones during pregnancy it seemed to ease the symptoms. I had low progesterone prior to pregnancy and Iv been told that it cannot be treated? X

Eddie83 profile image
Eddie83 in reply to ZCJH4

Doctors who don't provide copies of tests really make me do a slow burn ... it is such a paternalistic attitude!

SlowDragon profile image
SlowDragonAdministrator

If you have Hashimoto's, this is an auto immune disease and auto immune problems stop while you are pregnant (how brilliant is that! ) - but you can feel worse after pregnancy when the Hashimoto's comes back

Suggest you get Vit D, B12, Folate and ferritin levels tested too. Can get done privately if GP won't agree on NHS

ZCJH4 profile image
ZCJH4 in reply to SlowDragon

Thanks for the reply. I'm very interesting! Iv always considered I have hashimotos but they don't seem to value my feedback. I am going to buy some vitamin d and vitamin b6 today and hope for the best whilst I'm still waiting for a doctor that will listen! Makes it easier that I can take everyone's feedback on here and demand these things to be tested. Thanks again x

SlowDragon profile image
SlowDragonAdministrator in reply to ZCJH4

Ask politely for all your thyroid blood tests from last year or so. You are entitled to have copies.

See how results varied before, during and after pregnancy. Also if not had anti bodies tested before then ask that it be done - that would confirm if Hashimoto's

If you start vitamin supplements before you get vitamins tested - you won't get true result. Might be better to wait.

ZCJH4 profile image
ZCJH4 in reply to SlowDragon

Thank you for your advice. I have my GP practice so it may be difficult to get previous results? my new GP does not have my old information as of yet. I will see what I can do and il post them for everyone to have a look at x

You were anaemic in pregnancy!!! But they are not monitoring your iron levels and serum ferritin??? Is it the case that you are taking iron tablets but you have no idea whether it is fixing the anemia or whether your serum ferritin has climbed back to healthy level, ie, above 60, probably between 80 - 100? Am I right in thinking that you have no idea whether you are absorbing the iron tablets or not??

Anxiety is a well known symptom of iron deficiency. Tiredness obviously is. They cannot refuse you a ferritin check if you were anaemic so recently!

Did anyone check your vit D level?

If you were breast feeding and low in iron and D the milk is also low.

If your baby is a boy, it may be particularly important to ensure that he is iron-sufficient Especially if the cord was clamped immediately after birth. D is important for all young children.

It is your right to be given print outs of all tests, they will give them to you if you ask. I know it is very hard to be assertive or do anything when you feel so low and you are so busy, but you can just ring the surgery and ask them to do it.

in reply to

This is the UK advice on D. However, it is general advice for healthy mothers, not ones who were anaemic in pregnancy. if I were in your position, knowing you had anemia in pregnancy, and if your D levels turn out to be low too, and especially if the baby is a boy and was cord clamped immediately after birth, I would ask for another blood test on the babe in the coming weeks for ferritin and D, just to be sure. I am sure they would have tested his/her iron levels after birth, but I doubt they tested for D.

"Babies who are fed infant formula don't need vitamin drops if they are having 500ml (about a pint) of formula or more a day. This is because formula is already fortified with the vitamins they need.

If you are breastfeeding your baby and didn’t take vitamin D supplements during your pregnancy, your health visitor may advise you to give your baby vitamin drops containing vitamin D from the age of one month."

in reply to

Also, what did they suggest caused the anemia? Have you ever been tested for celiac disease, autoimmune gastritis, h pylori?

Here is an extract from a piece by Jacob Schor, which you will easily find on the internet.

"There appear to be several diseases that seem closely related. Autoimmune thyroid disease is not a lone entity. One in four people who make antibodies that attack their thyroid, also make antibodies that attack the parietal glands and this can cause B-12 and iron deficiency. It probably also lowers calcium absorption but let’s not complicate things further. And then there is celiac disease."

OK, I'll stop posting, I know you have barely time to read!

ZCJH4 profile image
ZCJH4 in reply to

Lol it's ok I appreciate all feedback! He has been tested for everything due to being premature and he is absolutely fine thankfully. I don't believe Iv been tested for any of the other you mentioned. I'm never told anything! And also never gave reasons for my low iron other than being pregnant. I find some doctors have a way of making you feel like a child therefore making it difficult for you to question things, and if you do the answers aren't clear x

ZCJH4 profile image
ZCJH4 in reply to

Thanks for your reply. I was put on vitamin d and iron tablets through out my pregnant. My iron levels were low however I'm not sure how low. My vitamin d was ok but lower range. I have had my iron checked since birth however it was about 2 weeks and I was still low. I have been on them since and haven't been checked again. I did try to express milk for my son however I didn't produce enough milk (he was premature and it didn't come in). He is on multi vitamins so they seem happy with him. I think I can email the doctor however I still need to work out their system! X

That's good news, they are keeping an eye on him even if they're not paying you much attention. I get very worried about posts about pregnancy here because my own son has Asperger's, and I think low iron and D in my pregnancy may well be part of the cause.

Have a read of the Jacob Schor article. If you are having probs absorbing iron you may well have autoimmune gastritis as well as Hashi's. About 35 per cent of those with Hashi's do. Celiac is a possibility, though less likely. But first get your results...

Eddie83 profile image
Eddie83

Some beta blockers (including propanolol) are known to lower your thyroid level. I've used propanolol before, but once I heard it was a thyroid killer, that was the end (although I probably would have stopped propanolol anyway because it makes me feel weird).

This business about "there being no medication to treat it" is pure BS. Many of us take T3 (as Cytomel or generic liothyronine) with T4 or NDT, to optimize treatment. On T4-only, I cannot get my TSH under 4.1 unless I force myself into T4-hyper-hell, or add in T3. Adding in T3 works much better! The normal thyroid puts out both T3 and T4; so it stands to reason that T3 along with your T4-containing preparation, could be useful.

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