New diagnosis of Hashimoto’s

[Milly84]

Hi everyone, I found this forum while I was looking up information on Hashimoto’s and have found the information so informative and helpful for me.

I knew something wasn’t right last yr, fatigue, heart palpitations, muscle aches, feeling low and anxious but I thought it was stress, I work in Cambodia in a stressful job. On a visit to Australia the doctor did some tests that revealed

TSH 16.8 (0.4-3.5)

Free t4 11.6 (9-18)

Vitamin D 35 (50-140)

B12 99 (135-650) active B12 10 (>35)

serum folate 17 (>7)

Ferritin 29 (15-300)

I was really surprised at how terrible all the levels were.

The doctor then tested TPO which showed high antibodies and did an ultrasound which confirmed Hashimoto’s.

The ultrasound showed 2 suspicious nodules that were then biopsied and the results came back inconclusive for cancer with recommendation to redo biopsy in 3 months. Is having these suspicions nodules common in Hashimoto’s, I can’t believe that I have to wait another 3 months for this.

I have also recently been having B12 injections and supplements yet 2 months on my active b12 has only risen to 19, is it normal to rise so slowly after injections.

Thanks for any help

[Sleepman]

I am fairly new to this too. and am Hashi. Have they started you on Levothixine (T4) it takes a while to kick in. I an 90 kg and I am on 150 mg/m3. I am massively better now and have been after about 2 1/2 months of T4

This forum scared me, as so many suffer but I have met a lot who are fine and convert T3 well.

I am not sure about myself at the moment and conversion but gluten complicates it for me,

I now find it a template of what is best practice and a way to learn how to live well.

You may have picked up it takes 6to8weeks to reach steady levels in your bloods. If your heart is OK and generally well then I pushed it a bit faster with Drs after starting on 50mg. There is a rough rule of 1.6 x weight in kg,

A lot of Hashi peeps cannot tolerate gluten and it may raise your antibodies and prolong symptoms. I am one of them, Not sure how easy this would be in Cambodia.

You are doing the right thing getting vit B12 up. From here learned a mouth spray vit D with vit K2 or 3?(check)) is likley best. Your stomach will not have been getting vits out of your food. Mine were low too.

On next thyroid bloods do freeT3 to know if you are converting T4 to the T3 that is the gas for all the body to work.

Be kind to yourself and ask those around you to cut you some slack while you get this sorted. When you can log your symptoms so you have stuff to help doctors with.

[Milly84 in reply to Sleepman]

Thank you Sleepman for your reply.

Forgot to mention I have started on 50mg Levi, I have the form to get TSH, free t4 and free t3 checked in a week’s time, just before I return to Cambodia. I am a bit worried about how I will manage it over there but am taking enough meds to last me quite a while. I find it strange as I feel like I have more hypo symptoms since starting the Levo but I assume I might need an increase, the most annoying part is that it seems to be making quite emotional like the smallest thing makes me start crying. I can’t go back to work if I am still feeling that way.

I haven’t heard of the b12 spray will have to look into that.

[Sleepman in reply to Milly84]

You seem to be doing really well. Your seem to be picking it all up well.

I was a blubbering wreck at the start. Thing is low T3 affects many people different ways as it is like the battery going low on your car and various bits do weird things.

I remember being called by the doctor to say your are going to be fine 1 tablet in a morning for rest of your life. I had to end the call for blubbling.

Vit D spray not vit B12 is what I take. I do not have correct vit D as it has no K in it. It is 4000 units a day.

I take a vitamin B complex like the Thorne Basic people refer to on here.

Google/internet search "healthunlocked" and" thyroid" and "what your are interested in" - I steuggle with the forum internal search engine.

I am a little beyond novice - luckily there are some delightful and knowledgeable people on here ...

[Sleepman]

Do you have to travel ? If so then I would (now several a's !!)

a) get a fall back plan

a) take heart you have some T4 showing on blood tests, I had none

a) get some T3 - I found some on internet as I was desperate to get well and sort things out.

It was for just in case.

b) Get blood pressure machine £30 (and heart pulse)_ and possibly even an ECG heart monitor.£100. (if too much then this may help you sort out what is going on.

c) measure your temperature first thin in the morning and see if it increases - mine went form 36.0 to 36.5 C when things started working. I am a man and do not have 28 day cycle that moves the temperature as well

d) Hopefully you have been on T4 a while and are not being sick on it etc. Some cannot take certain brands and some not even take any T4

Cut and paste from a post when I started feeling well

Tips

Be kind to yourself - allow rest time. Let people around you know it messes you up and in time will hopefully improve. You are ill. I put my hand up and say sorry brain fog.

5 to 7AM for tablets with only water and hot water till 10 ish. I am a late eater anyway.

Read this forum, to understand about vitamins, blood test times, when to take pills, etc etc.. There are it seems 10 to 15% who need different treating than just T4/Levo.

Get doctors to do blood tests as recommended on here (vitamins, minerals, diabetes and cholesterol)

Blood test for celiac - so many symptoms are similar. (could still be gluten intolerant)

Keep a diary of symptoms, I email myself with how I am getting on

drain fog, numbness, warmth levels, guts, etc etc.

I also logged in there doctors meetings, things to do and what's next - to stop me forgetting. Now I update it once a week, it was every few days.

I measure temperature under my tongue after a minute or so and think I have gone from 36.2 C to 36.6 or 7 over this 3 months. I did blood pressure too as I had access to machine (~£30 ish these days anyway) Also pulse.

If things had not improved for me I would have been engaging a private endo to start looking at T3 levels and T4/T3 conversion etc

[Milly84 in reply to Sleepman]

Thanks Sleepman for all the tips. It is overwhelming to begin with, all the different things to consider.

In Cambodia all medication is over the counter so I might be able to get t3 there, however I am taking enough levo to last awhile as the meds over there can’t be trusted as mostly it’s out in the heat all day, not stored correctly. I will pretty much just be monitoring myself over there, as doctor won’t have a clue about Hashimoto’s and can get blood tests done without seeing doctor anyway.

I was a bit upset with my doctor telling me my b12 levels must be due to a bad diet, which is not true I purposely eat lots of b12 foods. However she has tested me for celiac but haven’t got the results yet.

[Sleepman in reply to Milly84]

New posts will get more input from more experienced peeps.

Most people on T4 are OK.

T4 on its own is best they say. Good you have back up and get T3.

B12 being low they say is low stomach acid, which means you do not extract nutrients as well. Another Hashimoto thing.

Good luck.

[tattybogle]

Hi Milly84 .

Basic DIY guide for starting Levo :

You will need to retest TSH / fT4 after at least 6 weeks on 50mcg levo (it can take that long for TSH to move and settle in response to the change in T4 levels)

post those bloods on here for advice , but it's common to need dose increase to 75mcg at that point.

then same process again .. eg. take 75mcg for at least 6 weeks , retest at least TSH / fT4 ( +fT3 if poss)

post results on here and we can tell you how to proceed from that point.

Don't be surprised if symptoms are very up and down over the first few weeks after any dose change .. that is usual, it's very common to feel better for a brief time then back to not so good again , it's a bit like 2 steps forward /one step back until you get to something like the right dose for you.

Be kind to yourself .. realistically it will be at least a few months before you are feeling anything like stable .. most importantly , make sure you aren't going to run out of levo while working abroad .. you need stability ,

Take all blood tests under same conditions so you can compare them properly ....early a.m .. last dose levo 24 hrs before , fasting test .. (just water till after the test) take that days tablet straight after the test.

Hope that helps a bit .

Don't panic about all the difficulties you read about on here .. most people will feel a lot better with just levo once the dose is right and once they have allowed their body enough time to repair itself after being hypothyroid for a while .. this forum is not a representative sample .. it's full of 'awkward one's' who didn't improve as expected , or who did OK for a few yrs and then ran into problems later.

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."