Hi I am new to this site, and was recommended to post here having posted a similar thread on the Pernicius Anaemia site for folks thoughts and advice on a thyroid theme rather than PA
I was diagnosed with PA and a sub-clinical under active thyroid last November 2016
My story:
I was started on a low does 50microgrammes of levothyroxine and I had my 6 loading injections of Hydroxocobalamin over 3 weeks (due to lack of appointments available ) and then a injection every 3 months, was struggling with fatigue before the 12 weeks and so my lovely Nurse at the GP surgery moved me to 10 weekly. All seemed under control and i was coping and never had any neurological symptoms
UNTIL while on holiday in September hubby and i both picked a pretty grotty tummy bug which laid us both low for 3 or so days, we both then seem to be ok until i returned home, and had a gradual return of my original pre treatment symptoms, of bloatedness, severe fatigue, feeling full all the time and explosive diarrhoea, i returned to the GP thinking possibly i was harbouring a bug, stool samples negative.
Then started the beginning of some alarming Neurological symptoms, tingling in my left hand just 3/4/5 fingers and a wooliness and numbness of my left foot, visual issues in difficulty making the left eye working with the right, balance issues esp at night walking, and even more fatigue, shortness of breath on exertion and some aching and heaviness of my left arm (seems a little like lack of full control and occasionally overshoot the gearstick!) memory deteriorating. This is all one side only - my left, right is fine
Bloods were retaken and
B12 levels were 680 so 'normal' (oct 2016 were 178, post loading doses 1252)
FSH high 27.8 so told in peri menopause (fair enough i am 50!)
ferritin High 316 (was 407 in Oct 16 told to have repeat test in 3m as improving)
Folate 6
MCV 93 (gen been this level since Oct 16)
Thyroid:
TSH 3.6 (0.35-5) was 19.9 in Oct 16
T4 3.6 (4.6-12) was 10.7 in Oct 16
I have been started on Folate/folic acid for 2 months (taken 10 days so far) and do seem less foggy for this
I had a Head MRI last Thursday to exclude ischaemia, CVA, tumor
- awaiting results
Is my underactive thyroid actually possibly causing my new neurological symptoms?
and could a bout of Gastroenteritis have caused this???(unlikely i think) but odd was coping fine with 10 weekly B12 injections and my 50microgrammes of levothyroxine until this Bug?
I am due to see my GP again for scan results in a week and so if i can go armed with info re my thyroid levels - as is it correct this TSH reading should be 1 if on treatment and therefore my reading is still to high and technically need a higher does of Levothyroxine?? I havent been test for Hashimotos to my knowledge do i need to ask for this too?
I appreciate PA, Underactive thyroid and Menaopause symptoms can overlap sooo much with symptoms and am so very confused as to what may be the main cause?
Sorry for the waffling!
Any thoughts/experiences folks??
Thankyou for your advice suggestions in advance
Written by
MishB
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Glad you have found your way here - Welcome. Am sure people will comment and confirm the points I mentioned in replies on the thread on the PAS Forum re antibodies - testing - etc.
You are undermedicated to have TSH 3.6 and FT4 below range. Ask your GP to increase dose. Typical hypothyroid symptoms are thyroiduk.org.uk/tuk/about_...
The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.
Ask your GP whether thyroid peroxidase antibodies were tested when you were diagnosed with hypothyroidism. If not, ask whether they can be added to whatever blood tests you are next due.
High ferritin indicates infection or inflammation somewhere in the body. As it appears to be decreasing it is likely it was elevated because of your earlier illness.
Thankyou for reading my essay and replying...it is asMarz thought, but suggested i sought extra opinions
But what i find hard to understand that bloods come back and are filed as Normal, no appointment/ treatment required. Are GPs not looking at the patients history in line with the blood results ...ie aware i have an underactive thyroid and therefore results DO require treatment...it is sooooo frustrating
As i say i have an appointment next week, have emailed dionne for dr tofts article, so can go armed with evidence that i need more levothyroxine AND b12 injections
Very little time is spent on thyroid in med school so GPs think any old result is fine as long as it is within range.
Let us know how you get on next week. It takes 7-10 days for a dose increase to kick in before it starts working so you will be on top of Christmas before much improvement is likely.
Well, I'm no expert in B12, but I have you say your symptoms sound more like low B12 symptoms than hypo symptoms.
Having said that, your thyroid bloods are a little weird, so I would like to just check a few things, if you don't mind...
* Were both blood tests done early in the morning, fasting, with a 24 hour gap between the last dose of levo and the blood draw?
* How do you take your levo - on an empty stomach leaving at least an hour before eating, coffee, etc.?
* Have you changed the way you take it recently?
* Have you ever had your T3 tested?
I find it very strange that your FT4 was higher when your TSH was higher, and has dipped at the same time as your TSH. Should be the other way round. But, it's difficult to understand much without an FT3 reading - something doctors just don't understand.
Your tummy bug could have affected your conversion of T4 to T3, but that would have made your FT4 higher, not lower. So, the only other thing I can thing of that could possibly have had that effect is if you have high antibodies. So, yes, you really do need those tested. If you have PA, which is an autoimmune disease, you more than likely have autoimmune thyroiditis, too - Hashi's. I cannot for the life of me understand why doctors don't test for this automatically, but it probably has something to do with cost/their total ignorance on the subject.
However, I do keep coming back to the fact that those symptoms - which remind me of my symptoms when my B12 was low - do sound more like B12 than hypo.
Still, you are under-medicated, with a TSH of 3.6, you are still hypo, and do need an increase in dose. 50 mcg levo is very rarely enough for anybody, and if you aren't converting it very well, you will continue to have symptoms. But, we won't know how well you're converting, without seeing and FT4 and FT3 result, tested at the same time.
1. Original bloods back in oct 16 were a fasting blood test and yes done in the morning
The more recent thyroid bloods on 23rd oct were not fasting.i did ask the question of the saturday morning cover dr, but told didnt matter and was not advised either not to take levo in the 24 hrs before either and were taken early afternoon
2. I take my levo as advised by the prescribing pharmacist in the morning and not to eat until 20 to 30 mins later, alongside my other medication!
Reading this forum i now believe that i shouldnt be taking my other meds until 30 mins later, but this is how i have always taken these meds with NO neuro symptoms until October this year
I will now only take levo before i walk the dog and everything else once home again!
3. Never had T3 tested
Re antibody tests not really sure how they would show on a blood result sheet ? Immunoglobulins?, serum protein electrophoesis? Serum A1 antitrypsin?
Lots of things on my sheet but not sure what the above are!
It is looking like both my B12 and thyroid are the issue, but GP says having treatment for that...but as folk on the PA site have commented the symptoms should be treated, although i never had neuro symptoms before, not sure inwill get the alt day doses that it looks like i need until things settle down
Thankfully my GP is receptive even if i have to wait 2 1/2 weeks for an appointment, and will listen and read! More fasting blood tests and T3 as well as T4 and hashi tests too...getting my moneys worth out of the nhs methinks! Well only if they then treat me accordingly!
1. Doctors have no idea that the time of day, fasting and/or taking your levo before a test can drastically alter the results! Hard to believe, but there you are.
So, for the future, always have the blood drawn as early as possible in the morning - before 9 am - and fasting. TSH is highest early in the morning, and drops throughout the day. It also drops after eating.
Always leave 24 hours between your last dose of levo and the blood draw. If you take it within that time, it will show on your blood test as a high FT4 - that didn't happen with you, but your TSH was unnaturally low.
2. The prescribing pharmacist should be shot! You really should wait at least one hour before eating, drinking tea or coffee, and at least two hours - 30 mins is not long enough - before other medication or supplements, depending on what you take. So, you've been taking it all this time with minimal absorption! Which could very well explain your low FT4.
3. You should consider getting your FT4 and FT3 tested privately, and at the same time, if your doctor won't do it. You really need to know how well you're converting.
The antibodies would be called TPOab or TPO antibodies or Thyroid Peroxidase antibodies.
So, you need to take your levo correctly for at least six weeks before you can come to any conclusions about what it's doing and what it isn't. At the moment, all it's doing is lowering your TSH, but we don't know by how much because it was last tested at the time it would be at its lowest.
Just out of interest looked at bluehorizon home testing just now to speed process up and the thyroid 6 test which includes the antibody tests too...it says no fasting required? Now i am confused
Re my other meds having seen the list of those that supress levo not aware any of mine do, asthma meds singular, symbicoort, monteleclust, zirtec and salbutamol inhaler, as well as oestrogen pill, and levothyroxine...but an hour no cuppa or food, wow..no more cuppas in bed first thing for me anymore
All abit of a panic now as due to be going on a trip of a lifetime to costa rica in early Jan and want to be feeling better, but concerned now maybe all need to do is take levo correctly til then...but dont want to then find still feel c**** if i get to go away by not being on a higher dose!
Thankyou again for your input, this really is a voyage of discovering and i am a healthcare worker ( physio) myself but it worries me how little i and the gps seem to know...i appreciate gps have to know sooo many things
OK, don't panic, let's take this one step at a time.
I've never looked at what BH tests say, but you have to remember that they are private tests, not intended to influence your doctor. The thing is, as you say, GPs - and even endos! - know next to nothing about thyroid. We do, because we live with it! And, one of the things we've found, that they don't teach in med school, is that TSH drops after eating. This is quite a new discovery that won't have filtered down through med school yet, it takes years! So, as we all know that most doctors only look at the TSH, we want that to be as high as possible, for various reasons. So, we patients know that we need to fast before a test.
Eating won't affect your FT4 or your FT3, but it will affect your TSH. So, if you intend to show BH results to your doctor, you need that TSH as high as possible. If it's just for you, it doesn't matter, but you do always need to do your tests under the same conditions, or you can't compare them.
Also, as patients, we know that it doesn't matter what they say on-line, or in text books, if you don't leave a certain amount of time between taking thyroid hormone and taking other medication, you are going to compromise your absorption. It's a risk you just don't need to take! I have done a bit of experimenting on this, myself, and I have found that for the best results, I need to leave at least six hours between taking my T3 and my magnesium! You won't find that written anywhere.
So, for best results, you need to leave at least two hours between taking your levo and taking your other medication. Except for your inhaler, because that doesn't go into the stomach, so it doesn't matter. But, your oestrogen pill you need to leave 4 hours, not just two.
What happens is that levo binds with all sorts of things in the stomach and the gut, and becomes unavailable for use by the body. So, you need to give it time to clear. Otherwise, there's no point in taking it. It's a simple as that.
However, if you absolutely must have your cup of tea early morning, why not take your levo before bed? Or, if you have to get up in the night for the loo, take it then. As long as your stomach is empty, and you don't eat for an hour afterwards, you can take your levo any time you like. It doesn't matter. Ignore those that say you have to take it in the morning, that's not true. Some people find they even feel better for taking it at night! Just 2 to three hours after eating. But, it does mean no late-night snacks or hot drinks before bedtime. But, you have to chose what is more important, early morning tea or bedtime cocoa!
When were you due to retest your thyroid? If you are going away in early January, you still have time to retest and increase before then. Of course, your next tests won't count for much, because you won't have had time to completely synthasise the 50 mcg you're currently taking, because you've never taken it correctly. But, never mind, an increase to 75 mcg will probably be a good thing, but still low enough to count as a starter dose. But, let's put it this way : if you don't start taking your levo correctly now, you're never going to feel well! If you can get the higher dose between now and your trip, go for it.
It is, indeed, a voyage of discovery. There's always something new to learn. But, you're not going to learn it from the majority of healthcare workers, because they just don't know! They don't learn it in med school, and don't care enough to find out once they leave - unless they are hypo themselves. So, think of the people you are going to be able to help, once you've started learning! You really will be able to make a difference to the hypos you come in contact with in the course of your work.
My Gp actually has just called me this morning ( and last night at 9pm but i missed the call thats service for nhs!) My MRI of the brain has thankfully come back clear woohoo no nerve damage from my PA
We chatted re my sleuthing and she has printed off fresh blood forms for me to collect today to have a fasting test for all the thyroid tests TSH and T4 and the thyroid antibodies, but says nhs doesnt allow them to do T3, she says she has never heard of anyone not taking their levo for 24hrs before test and has never asked a patient to do so, so has said i should take as normal...hopefully get this done on thursday morning early and they will all be back for my appointment with her on Tuesday afternoon!
re taking levo at night we eat late so that isn't going to work, but what i can do is just swop all the other meds to night time!
Lots of the advice given here is patient to patient experiences and things that have worked well. After some time you will soon be able to judge those with good advice for you. You can click onto my name above in Blue or any other name you see and can then read their Bio - it will tell you a little about those people in most cases. You may wish to complete yours - this saves you having to write and re-write information - you can send them to your Biography.
I have a feeling once your thyroid levels are optimal you will find the asthma will improve ( the thyroid balances fluid levels I have read ) Sorry in a rush ! - have you had your VitD levels checked ? Perhaps you have posted them already - will have a look later
Do hope you have seen the above post including the research paper linked at the bottom. One of the researchers Dr John Midgley is a member of this forum - diogenes. You can Read his interesting and informative posts and replies if you want the science
And no i havent had my Vit D tested, but fortuitously when i collected my blood forms at lunchtime today my GP was there and has now added this to the long list esp as i have the achy heavy left arm! So thank you
and yes had spotted the article and printed it off to read and take along next week to GP appointment!
So glad you are making progress. Did your GP agree to test for the Full Thyroid Profile - TSH - FT4 - FT3 and anti-bodies TPO and Tg ? Often it is the labs that refuse to test more than the TSH - if that is in range - over-ruling the GP. Also they only test TPO and not Tg. All about saving costs and not attending to the needs of the patient.
Links below about VitD. Your result needs to be around 100 !
When you have your results and you wish to post them with the ranges - it would be good to start a new post. It will get lost far down in this thread
Just noticed your reply above to greygoose. As explained the TSH lowers after eating so hence the patient to patient advice is to fast so there is a realistic TSH result which is usually higher than non-fasting. This prevents many people from having their dose reduced or even from having a diagnosis
It really is pathetic - the T3 is the only ACTIVE Thyroid hormone needed in every cell of the body so when low that is when things go wrong. If I was to believe in conspiracy theories this would certainly be one of them as people remain unwell when the T3 is low with endless conditions that are treated individually with pills and potions making dosh for you know who It is also the more expensive of the Thyroid Tests - hence not being done at the expense of people's suffering. I was T3 only for many years - and only recently re-introduced T4. I live in Crete so take care of myself
If you go for Private Testing afterwards - you will need to have both the FT4 and FT3 tested together .....
' have the blood drawn as early as possible in the morning - before 9 am - and fasting. TSH is highest early in the morning, and drops throughout the day. It also drops after eating.
Always leave 24 hours between your last dose of levo and the blood draw.'
I Had my blood drawn at 08.30 this morning and the phlebotomist was surprised i was fasting, said she had never heard of that or that TSH highest in morning!!!! MY Oh My...its a real worry
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Help with blood results please 
Newly diagnosed with underactive thyroid. Need help with blood results!
Help with results please 
Help with Blood Results
Help with results please
