latest update

[Meerkat1234]

This is my latest update. Saw a dr yesterday. He has put my levothyroxine up to 50 mcg. I have to do it slowly. I take 25 one day and 50 the next day. He wants me to see a Haematologist as my blood platelets are too big. Has anybody else had the same as I am worried.

[SlowDragon Administrator]

previous post on 25mcg levothyroxine for many months

healthunlocked.com/thyroidu....

FT4: 9.9 pmol/l (Range 7.7 - 20.6)

 Ft4 is only 17.05% through range 

FT3: 4.3 pmol/l (Range 4.2 - 6.9) 

Ft3 only 3.70% through range 

Horray……well done at last

Is the 50mcg tablets same brand as 25mcg tablets

[Meerkat1234 in reply to SlowDragon]

Hello SlowDragon. I am staying on the Wockhardt which I take without any trouble. The doctor said to stay on the same brand. This is good as long as the chemist can get that many. They said they had plenty at the moment. Do you know anything about my blood platelets being too big?

[SlowDragon Administrator]

Your previous post shows you have very low B12 and low folate, both as direct result of being hypothyroid and on too low a dose of levothyroxine

Low B12, low folate and being hypothyroid can all be cause of large blood cells

my.clevelandclinic.org/heal...

Macrocytic anemia is a blood disorder that happens when your bone marrow produces abnormally large red blood cells. 

People may develop macrocytic anemia when they don’t get enough vitamin B12 and/or folate (vitamin B9) to create healthy red blood cells, or they have medical conditions that prevent their bodies from absorbing those nutrients.

Hypothyroidism: This condition affects your thyroid function and may be linked to macrocytic anemia.

[Meerkat1234]

He said my B12 was normal but I know it isn’t. When this thyroid journey began my B12 was so low they put me on lots of B12 injections and I felt so much better. Then for some reason it went really high so they stopped. The article you sent I read a similar one. Because I can’t digest protein my only B12 is in the little food I eat. I am diagnosed with health anxiety so I was thinking leukaemia . It does sound like it could be this anaemia which is making my blood platelets large. He wouldn’t listen to the eating problems like all the doctors. Like you say hooray at last my levothyroxine is going up. He was amazed that I had been left on just 25 mcg. This doctor is the most experienced one in the surgery, and that is why he did the whole thyroid testing after my husband wrote to him on your advice so thank you for the help.

[SlowDragon Administrator in reply to Meerkat1234]

Getting started on extra levothyroxine is most important

you could cut 25mcg in half and take 1/2 tablet extra every day for first few weeks

How long did GP say to wait before increase to 50mcg every day?

Suggest you increase to 50mcg every day after 6 weeks assuming going ok

Vitamin levels

B12 results always go high on B12 injections……but that doesn’t mean they should be stopped

You should

A) have B12 injections restarted

Or

B) take daily B12 supplements

How long until see Haematologist?

Did you buy any B12 drops

natureprovides.com/products...

2 weeks after starting B12 drops add separate vitamin B complex to improve folate. This improves all the B vitamins including B12 too

try these vitamin B complex drops in glass water or orange juice

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

Or these capsules

But these are large to swallow. Can tip powder out into hand and swallow with water. (Rather nasty taste)

uk.iherb.com/pr/thorne-basi...

Stop vitamin B complex 3-5 days before any blood test as it contains biotin and biotin can affect test results

[Meerkat1234 in reply to SlowDragon]

Dr didn’t say when to go up to 50 every day. Don’t know when seeing Haematologist. That is good idea to cut levothyroxine up. I want to start B12 injections again but it will mean a fight with them. I have heard they don’t want to do it because of cost but I need them because of the digestion problems which is the low FT3 isn’t it. I didn’t realise B12 goes high nor did the dr who prescribed them. You are a very knowledgeable lady SlowDragon.

[SlowDragon Administrator in reply to Meerkat1234]

I had to learn the hard way …..left extremely under medicated on too low a dose levothyroxine (75mcg) …..ended up bedridden/in wheelchair

Had to fight to get correct treatment every step of the way

Now completely recovered and lead totally normal life. Walk at least 10,000 steps a day etc etc

Only with knowledge of members of this forum as to the absolute importance of GOOD vitamin levels on levothyroxine did I make progress ….

Also to look at hidden food intolerances

strictly gluten free since 2016 - astonishing improvement

Thyroid hormones

125mcg levothyroxine 5 days a week and 112.5mcg 2 days a week (always Mercury Pharma brand)

Plus liothyronine (T3) 15mcg everyday

(as 3 x 5mcg doses per day )

Was ESSENTIAL to improve low vitamin levels

I still take vitamin D, magnesium and vitamin B complex every day

dairy free diet since 2022

more on my profile

[Meerkat1234 in reply to SlowDragon]

You certainly have been through it and I am where you were bedridden and we just got a wheelchair. I had lost all hope but to read about your journey and now well is wonderful. I will be there too one day. You are an inspiration to me and my husband. We were desperate and you have helped us so much. Thank you so much. Will keep you updated.

[humanbean in reply to Meerkat1234]

You should read SlowDragon 's Profile/Bio if you haven't done so already. Her journey to good health is amazing :

healthunlocked.com/user/Slo...

[Meerkat1234 in reply to humanbean]

Hello humanbean. I have read her bio and it is amazing. I am at the start of it. Hope you are well. Thanks for reply.

[BlueKeith in reply to Meerkat1234]

I have been struggling on 75mcg when my gp was just assuming I was over medicated. I ended up with my bowels just stopping and being very ill. After blood test I was under medicated. I'm up to 100mcg and after 2 weeks starting to feel better. Admittedly I've been soft with my gp and just accepting what they say. My advice is to push the gp. Keep pushing your symptoms onto them and argue if need be. Hope you find your cure.

[Meerkat1234 in reply to BlueKeith]

Hi Tigershull. Thanks for your reply. I will be better like you when I am taking more levothyroxine like you did. I was left on 25mcg for a year. I can’t deal with the drs. It was a new dr and my husband wrote him a letter after SlowDragons advice. I am very weak and very unwell at the moment. I will get there eventually. Just started on higher dose but it needs to be done slowly. I am sorry you have been unwell and pleased you are feeling better. These doctors are very hard work. Thanks for the encouragement. It really helps me not to feel alone. 😊

[Meerkat1234 in reply to Meerkat1234]

Morming SlowDragon. What did you mean by look at food intolerances.

[SlowDragon Administrator in reply to Meerkat1234]

He was amazed that I had been left on just 25 mcg. This doctor is the most experienced one in the surgery, and that is why he did the whole thyroid testing after my husband wrote to him on your advice so thank you for the help.

Well done to your husband on writing and getting you an appointment with a better GP

Well done on getting dose increase

Suggest you Only see this GP in future

You will need several further increases in levothyroxine over coming year

[Meerkat1234 in reply to SlowDragon]

My husband couldn’t see me suffering like I have for so long an increase at last. I was told by one dr that as the levothyroxine goes up my digestion will improve. I will only see this dr in the future. My husband says thank you for saying well done to him. He said blood test in 8 weeks so he knows what he is doing. He was the sixth dr I have seen at my practice but at long last got the right one with your help. Will keep you updated. Thanks again.

[SlowDragon Administrator in reply to Meerkat1234]

how are you getting on with magnesium supplement and vitamin D

Have you been able to tolerate taking supplements?

If not ……try again in few weeks once you get settled on higher dose levothyroxine

[Meerkat1234 in reply to SlowDragon]

I will leave the supplements and take the levothyroxine like you suggest.

[shaws Administrator in reply to Meerkat1234]

I have pernicious anaemia and my Mother had this condition too.

It is very important that your GP takes the action to diagnose whether or not you have Pernicious Anaemia. If you do have P.A. you must get regular B12 injections as our stomach cannot absorb it.

[Meerkat1234 in reply to shaws]

My doctor says I am have anaemia and large blood platelets but said my B12 is normal which doesn’t make sense. He was Asian with a mask on and his English was appealing. Sending me to a Haematologist and I am petrified I have blood cancer. I am virtually bedridden and feel nearly dead.

[Meerkat1234 in reply to Meerkat1234]

I meant appalling not appealing predictive text

[shaws Administrator in reply to Meerkat1234]

Your doctor may not have the experience of treating patients.

I doubt you have cancer but you can have pernicious anaemia. I have pernicious anaemia and my doctor said I can have as many B12 injections I want. I used to get a quarterly injection but now I have one every month Your doctor doesn't seem to know the difference between Pernicious Anaemia and anaemia.

If there's another doctor in the surgery make an appointment with him/her and just say you're worried as you don't want to have a misdiagnosis.

"medlineplus.gov/ency/articl...

Let me know how you get on.

[Meerkat1234 in reply to shaws]

The doctor doesn’t know what is wrong with blood so sending me to Haematology. I looked up your link and it said page unavailable. Was it about Pernicious Anamia and anaemia. Why was the last part of your message edited by moderation team. When I became unwell another Doctor the one who owns the practice found my B12 deficiency and gave me them then he stopped because B12 went too high which SlowDragon said it does. She told us what tests to have and it was for anaemia but we couldn’t understand what he was saying. Thanks for reply.

[shaws Administrator in reply to Meerkat1234]

I have also tried to open the above link and, as you state, it doesn't open. It also states "We're sorry. We can't find the page you requested."

Usually when we find information we want to 'go over' what has been stated and we want to copy

So I can only guess that someone didn't agree with some words and removed link!

Let's hope that the Haematology Dept is helpful!

[JeniMac]

Hi. My platelets have been high for 12 years. I had blood tests and a bone marrow biopsy. I had a condition called essential thrombocythemia. Which has now progressed to Myelofibrosis I take medication to manage this. I also take levothyroxine 175mg. And Aspirin. You will get this sorted. Good luck and let me know how you get on x

[Meerkat1234 in reply to JeniMac]

Hello JeniMac. Thank you for your kind reply and all your support. I was so scared the blood platelets were leukaemia or other cancers. You have really put my mind at rest. I just started 50 levothyroxine today. I have to take 25 mcg tomorrow. I have to increase slowly the doctor said. I think my blood might be a kind of anamia. I read about this being linked to thyroid. Thanks again. Will keep you updated.

[JeniMac in reply to Meerkat1234]

I have anemia also have to have b12 injections 1 every 3 month. I had underactive thyroid then a few years later my platelets were going up so had a few blood tests and got diagnosed with ET. I manage it really well. So don't panic you will get there 💖

[Meerkat1234 in reply to JeniMac]

Hi JeniMac. Thanks for your encouraging reply. The dr says my B12 is normal but it is just over and I don’t eat anything with B12 in it so it will soon be below. I need injections because can’t take supplements, what is ET. I am panicking. I do that really well as I have Autism and ADHD. I have started on 50mcg and 25mcg every other day. I will get there like you but feel really unwell and weak at the moment. 🦋

[JeniMac in reply to Meerkat1234]

Essential thrombocythemia is a MPN which is a blood cancer but sounds worse than it is. It is progressing to Myelofibrosis. I take medication which keeps it under control. I'm sure you will be sorted. Try not to panic as stress can make you feel worse. I just take each day as it comes. If you ever want to talk I'm her OK 💛

[Meerkat1234 in reply to JeniMac]

I am really panicking. I am virtually bedbound sleeping downstairs with a commode as I am too weak to get up the stairs. We’re you this ill. is that related to your thyroid. I can’t eat protein and living on a very restricted diet of carbohydrates. I am very scared.

[JeniMac in reply to Meerkat1234]

I'm always tired that's due to thyroid and myelofibrosis. Living on Carbs isn't good you need variety. If you write how you are feeling and take to your appointment. It's easier to write down everything so it can be discussed I'm sure when they get your correct dose you will start feeling better. Try and get outside for some fresh air. Even if you open your door and sit out it's great for your health. Also try and take up a hobby take your mind off things 💛

[Meerkat1234]

Sorry you are so tired. I live on carbohydrates because if I eat protein I am days in pain and don’t know why. Doctors are not interested and I have told many including consultant gastroenterologists. I am so fed up. I have no life. Just wake up waiting to go back to sleep. Thanks for caring and all of your good advice.

[SlowDragon Administrator]

How is the increase in levothyroxine going

Have you been taking extra 12.5mcg of levothyroxine every day so on 37.5mcg levothyroxine per day

After 6 weeks you could try increase to 50mcg everyday

[Meerkat1234 in reply to SlowDragon]

I tried to go up to 50 mcg and had a pounding heart and really bad hyperactivity so couldn’t sleep I rang dr and got a different doctor who told me to go back on 25,mcg, I then got a bad groin abscess, given antibiotics which made me projectile vomit and I brought up,my stomach lining like coffee grounds.The hospital was getting ready to operate.I will try again.what are they all talking about FT3. I am confused. I will try again to 50mcg of levythyroxine. I had a blood test on Monday so will put the results on here for you to sort out for me.

[Meerkat1234 in reply to SlowDragon]

the doctor told me to take 25 one day then 50 the next day. Is that too quick..

[SlowDragon Administrator in reply to Meerkat1234]

Might be easier to tolerate adding 1/2 a 25mcg tablet everyday

Also taking it separately from the 25mcg

If you take 25mcg waking, take the 12.5mcg mid afternoon or bedtime

Get a weekly pill organiser for storing the other half till next day

shavers.co.uk/safe-sound-sa...

Your body is so desperate for the extra thyroid hormones, but you have to increase slowly as been left on far too low a dose for far too long

[SlowDragon Administrator]

To cut 25mcg in half either use a pill cutter or a sharp craft scalpel

amazon.co.uk/Swann-Morton-D...

[Meerkat1234 in reply to SlowDragon]

Thank you SlowDragon for the advice on how to increase slowly. The doctors way was too fast and I am extremely hypersensitive to the medication change because of my Autism/ADHD. I will let you know how I get on. Take care.