New bloods and reaction to Levothyroxine

[Kimmicustard]

Hi Guys

So I went to see the doctor last week after staying off Levothyroxine for 2 weeks at his request as I was reacting really badly to it (at this time my TSH was 1.0 apparently normal but they didn't even do the other thyroid tests so I found this to be useless and I was still in a lot of pain all over my body with many, many other hypo symptoms) - I felt better within 24 hours of stopping the levo in terms of no bloating/nausea/breathlessness/mucus in throat. It would seem I am quite allergic to this tablet! When I told him this, he said 'I have told you I cant prescribe the other drug as its too expensive and you won't get an appointment with an endo for absolutely months and months and months ' he was arrogant with me and uncaring and spoke to me like he just couldn't be bothered dealing with me.

I ended up shouting at him and bursting into tears and saying well what am I supposed to do - would he give a needed drug that contained nuts to a nut allergy sufferer? After shouting at him saying I felt like I was getting nowhere with him and I just feel so ill, he apologised to me then started to listen. I mentioned speaking to you guys and he didn't even know about the vitamins etc. he then looked on the system and low and behold he found me a fast track appointment to see an endo in 5 weeks time.

In the mean time, he agreed to do the bloods for the vitamins mentioned and also a coeliac test (as I am also struggling to eat loads of different foods) and liver function test and another thyroid test (he said he can only do TSH though as I am already diagnosed!) he said that the endo would be able to do T3 test etc. though. I asked him what to do in the mean time with the levo and he said 'well - you'll just have to be ill with it until you see the specialist' I had the blood tests, then took the levo for the first time yesterday and was severely ill - I could hardly breathe due to fluid around my abdomen and I was on the loo within 20 minutes. I then felt breathless and really nauseous all day. I am also struggling to eat/drink anything at all with milk in it now - it gives me the same symptoms.

I phoned the surgery and they advised me to just stop taking it so now I am unmedicated for 5 weeks until I see the specialist. So - please see below my new results for everything (I'm just waiting for the coeliac test to come back now) - any advise would be gratefully received as your help last time has helped me to get him to do something!

TSH is now 1.6 (0.2-4.0) (he wouldn't do the other tests and I have been off levo for 3 weeks now - previously 1.0 whilst on levo then before that it was 9.7)

B12 452ng/L (211 - 911)

Ferritin 143 ug/L (10-291)

Folate 2.9ug/L (3-14.4)

Vit D 14.4 nmol/L (<30 indicates deficiancy)

Serum total bilirubin level 13 umol/L (<21)

Serum alkaline phosphatase level 87 iu/L (30-130)

Serum alanine aminotransferase level 128 (<40)

Serum calcium level 2.23 (2.2 - 2.6)

Serum albumin level 45 g/L (35-50)

Serum adjusted calcium concentration 2.13 mmol/L (2.2-2.6)

Serum inorganic phosphate level 0.82mmol/L (0.8-1.5)

Thanks in advance!

[Gr8Nica]

Your are deficient in folate and severely deficient in vitamin D (muscle and joint pain). Go back to your GP and ask to be treated for those deficiencies. Other users will most likely give more details and urge you to do the same.

From the look of your symptoms it seems you are getting reaction to some of the fillers in your levo. Please don't stay off levo (5 weeks off and another 5 will only make you feel worst) and get a new script and ask for a different brand of levo. If the next one will cause nausea, breathlessness or headache change it to next one. Currently there are 4 brands of levo. If all give you nausea, breathlessness, etc. try to push endo for T3 although very unlikely to be prescribed.

[Kimmicustard in reply to Gr8Nica]

Thanks for your reply Gr8Nica - I've tried two different ones so far and I was the same with both. Do you know what they are all called please? Thanks very much for your help

[helvella in reply to Kimmicustard]

Kimmicustard,

They are all listed and detailed here:

thyroiduk.org.uk/tuk/treatm...

What makes have you tried so far?

[Kimmicustard in reply to helvella]

Thank you - I have tried Actavis and Almus so far.

[helvella in reply to Kimmicustard]

Kimmicustard,

They are one and the same thing.

Almus is Actavis packaged for the Almus subsidiary of Walgreen Boots Alliance.

If you look at the Patient Information Leaflet it will clearly say the same details on both of them.

[Kimmicustard in reply to helvella]

Arr - so it may have been the same one I've had then?

[helvella in reply to Kimmicustard]

Yes.

[shaws in reply to Kimmicustard]

Try taking an anti-histamine before you take levo and if you don't have a reaction you have to change to another make of levo as you have some sensitivity to fillers/binders.

[Gr8Nica in reply to Kimmicustard]

Actavis, Mercury Pharma, Teva and Wockhardt. Old and new Teva was making me nauseous and Mercury Pharma gave me huge headaches.

[Kimmicustard in reply to Gr8Nica]

Which do you find is the best? How do you get a different brad - do you just ask at the chemist?

[helvella in reply to Kimmicustard]

Kimmicustard,

In the first instance, just ask at the pharmacy. You might need to get a new prescription, though. And different pharmacies vary hugely as to how understanding and helpful they are.

[Kimmicustard in reply to helvella]

That's great - thanks for your help. They are usually very helpful at our local pharmacy so I might give them a call and see what I need to do - I noticed on the Thyroid UK website it said that the new formulation of Teva is lactose free - might see if I can try that one. You guys are fab - thanks so much for your help. Its much more than I'm getting from my GP!

[Gr8Nica in reply to Kimmicustard]

From what I've seen Almus (packed up by Boots) and Actavis are the same. Take your old tablets and try asking your chemist to supply another brand. Wockhardt has the least fillers but it's only supplied as a 25mcg dose.

What dose were you on recently?

[Kimmicustard in reply to Gr8Nica]

I was on 50mg - maybe they could give me 2 packs to make up the 50?

[Gr8Nica in reply to Kimmicustard]

Try that. Next option would be Mercury Pharma.

[Clutter]

Kimmicustard,

Alanine aminotransferase level is high which indicates liver dysfunction google.co.uk/search?q=alani...

Folate is deficient.

Adjusted calcium is deficient.

VitD is severely deficient.

What's your GP doing about these?

[Kimmicustard in reply to Clutter]

Thanks Clutter...Im a bit worried about the liver result in particular. I have an appointment to see him on 5th Feb. Hopefully something will get sorted. Do you know if liver dysfunction can be caused by thyroid problems?? Thanks for your help. 😊

[Clutter in reply to Kimmicustard]

Kimmicustard,

TSH 1.6 is low-normal even 3 weeks off meds and so I doubt it will cause any rise in liver enzymes.

I don't know why your GP didn't address your vitamin and mineral deficiencies when he saw the results.

Ask GP to order parathyroid hormone and calcium again to rule out hypoparathyroidism. These need to be done in the hospital phlebotomy dept because parathyroid hormone blood test is time sensitive.

Your GP should refer to local guidelines or the cks.nice.org.uk/vitamin-d-d... Do NOT accept a prescription for 800iu which is a maintenance dose prescribed after vitD is replete >75. Vitamin D should be taken 4 hours away from Levothyroxine.

GP should prescribe 5mg folic acid for 2-3 months to raise folate. Folate and B12 are synergistic so B12 won't be transported if folate is deficient.

[Kimmicustard in reply to Clutter]

Thanks so much Clutter this really is helpful for me to take to show him. Last time I saw him he only started listening to me once I told him I had gained knowledge from you guys on here. I am seeing a different GP on 5th though as I am apalled at the fight I have had so far with the other one and Im only at the start of my journey! X

[SlowDragon Administrator in reply to Kimmicustard]

If you have a supportive friend or family member to take along to the next consultation it can be beneficial

Doctors are much more circumspect with a witness there.

Print out this Oxfordshire vitamin D deficiency guidelines if you can't find your own CCG guidelines, they won't be very different

[SlowDragon Administrator]

You are severely deficient in vitamin D

Make an urgent appointment next week if not been prescribed anything

Your GP should prescribe loading dose

Look up your local CCG guidelines for vitamin D deficiency

Eg Oxfordshire

oxfordshireccg.nhs.uk/profe...

Plus have you had coeliac blood test? If not ask that is done

Folate is also deficient and you must be prescribed folic acid supplements

[Kimmicustard in reply to SlowDragon]

Thanks so much for your help again slowdragon. I am on holiday from tomorrow for a week so made an appointment for the day after I get back. I had a coeliac test the other day with the other bloods but I spoke to my friend who works in the phlebotamy department and she said they are taking 3 weeks to come back at the moment due to a back log in Leeds where they get sent to 😔 To be honest I have had trouble for a while eating foods with gluten in them so it could be a possibility. I have also developed a really bad reaction to things with lactose and milk in them which has got much worse the last few months. Your help is much appreciated as it really help to take print outs in etc. Thanks again...hope you have a lovely weekend.

[SlowDragon Administrator in reply to Kimmicustard]

A very high percentage of us become gluten intolerant and/or dairy intolerant due to being hypo or due to levothyroxine

I don’t think anyone really knows which is the cause - only that it’s very common result

Don’t be surprised GP is unaware

[Kimmicustard]

Hi Guys! Update on the above.

I saw a different doctor yesterday and he was absolutely lovely - I had no fight from him whatsoever, he was so helpful and really sounded bothered and like he wanted to help. He told me that the new formulation of TEVA brand of Levothyroxine is now lactose free so he wrote me a named brand prescription and said to try that - don't know why the other ogre couldn't do that?

Picked it up and on my first tablet today - so far so good - no symptoms at all from it yet whereas the other brand reacted with me within 15 minutes. Fingers crossed it was the lactose then....but more importantly I am now on medication again, lets see how I get on with the pain etc now!

He also prescribed loading dose of Vit D for 7 weeks then 1000 iu every day after that. Also, folic acid 5mg for 2-3 months.

My coeliac bloods just came back today as negative which surprised me as I am getting really ill from all sorts of foods now so wonder just to go gluten/lactose free anyway or should I ask for a biopsy do you think as I have many symptoms of the disease?

Also - I really want to try and help myself get back to tip top health so wondered if you can give me advise on all the supplements I could take to help my body out?

Thanks in advance for your help and advise.

[SlowDragon Administrator]

Would definitely recommend you try absolutely strictly gluten free diet for 6 months minimum

Can you add your actual vitamin results if you have them, members can advise

Glad you found helpful doc

Make sure to get bloods retested in 6-8 weeks after starting this new brand on Levo

[Kimmicustard in reply to SlowDragon]

Thanks SlowDragon - here are my results - he said the raised liver enzyme may be because I had flu recently, however he wants to re test in 6 weeks:

B12 452ng/L (211 - 911)

Ferritin 143 ug/L (10-291)

Folate 2.9ug/L (3-14.4)

Vit D 14.4 nmol/L (<30 indicates deficiancy)

Serum total bilirubin level 13 umol/L (<21)

Serum alkaline phosphatase level 87 iu/L (30-130)

Serum alanine aminotransferase level 128 (<40)

Serum calcium level 2.23 (2.2 - 2.6)

Serum albumin level 45 g/L (35-50)

Serum adjusted calcium concentration 2.13 mmol/L (2.2-2.6)

Serum inorganic phosphate level 0.82mmol/L (0.8-1.5)

I was also wondering about zinc, iron, calcium and magnesium though too if you know anything about these in general please? Are they beneficial to thyroid sufferers?

[SlowDragon Administrator]

Calcium rises naturally as direct result of vitamin D supplements. That's why vitamin K2 Mk7 is good idea. It sends extra calcium into bones where it should be, rather than muscles

Magnesium, yes us hypos often too low in it. Unless you have kidney issues it's ok to supplement. Not a lot of point testing, UK test is unreliable and always in range

Iron, only supplement if low

Zinc. Might be low. You could test. Likely would need to be private test

[Kimmicustard in reply to SlowDragon]

Great - thank you! Is it still the case we should take these 4 hours apart from our Levo?