Hi I am newly registered, thanks for letting me join. I am not here to self diagnose but just wondering if there is something my GP is missing that I should know about.
So I am 28 years old, female and have had symptoms in varying intensity and frequency over the past 20 years or so, even when I was a child. I was diagnosed hypothyroid in 2011. Please see symptoms list below:
eyelash loss
eyebrow loss
feeling cold
tired all the time
nausea/feeling sick
dizziness
bloating when eating certain fruits, vegetables, bread, pasta, wheat
ulcers in and around mouth and on tongue when eating bread, pasta, wheat
zero libido
hard stools
tired and wired
fluctuating weight
looking pale and ill
heavy and painful and clotty and irregular periods
depression
memory loss
concentration loss
tinnitus
bone and joint pain
breathlessness
low pulse about 40 - 50 beats per minute
low body temperature about 34 - 35.9 degrees Celsius
swelling in neck - ultrasound confirmed goitre and enlarged thyroid gland with hypoechoic lobes
flaky and splitting nails
I have had so many tests done, no idea where to begin with them or which ones to post so here are my previous labs. GP tested my thyroid function last Fri and I have been told over the phone that they have been flagged up again as abnormal, presumably undermedicated yet again if my symptoms are anything to go by.
I have already had my GP ask me if I am stressed or have possible IBS, endo has written in letters to my GP that I have general anxiety disorder.
I like to think I have come at the right time because 2018 is going to be a big year for me, major changes in my life with marriage and possible pregnancy (while I am still young). My GP and endo seem to be letting me down and I know I can be better. I want to be better. So I want to be the best I can for my friends and family. My mum has a progressive illness and doesn't have many years left (she is 51); my dad has been told by his doctors that he has a very short life ahead of him due to his lifestyle and I want to be well enough for them to see; that way they can live the final years of their lives seeing me happy, healthy and with a good life ahead of me.
Thank you in advance.
OCT 2017 (175mcg levothyroxine - taken 2-3 hours after food and drink and only drinking water)
Serum TSH *5.6 mIU/L (0.27 - 4.20)
Serum Free T4 13.8 pmol/L (12.0 - 22.0)
Serum Free T3 3.7 pmol/L (3.10 - 6.80)
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leanna1
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You are undermedicated, as indicated by the blood test and more so by your symptoms. As a starting point they should at least get your fT4 up to around 18.0 or 20.0. You can then assess how your are doing. I would take someone with you to your next appointment and tell the doctor this is ruining your life and you want more appropriate treatment. Although 175 mcg is a reasonable dose levothyroxine absorption varies between individuals, so it's not unreasonable to up your dose, perhaps to 250 mcg and then reassess.
Since you get breathless it would be worth checking your iron levels as they tend to be low in hypothyroidism.
I had IBS which went away when my hypothyroidism was treated. It's worth trying a magnesium citrate supplement for the IBS as it relaxes the gut and magnesium deficiency can make the gut more sensitive.
Thank you, unfortunately I have a telephone appointment since that was all the receptionist could offer me at the time. All I know is that the endo has been controlling my dose and the GP has been keeping out of anything thyroid until now. I have untreated iron deficiency anaemia as well.
Iron deficiency anaemia explains your breathlessness. If you have been prescribed iron tablets take them at a different time to your levothyroxine as iron reduces levothyroxine absorption. The iron tablets tend not to work very well until the hypothyroidism is sorted.
During your telephone consultation insist on a dose increase. If you get no joy book a proper appointment and take an assertive person with you.
I can't say anything without swearing. Just go to your pharmacist and ask them for a good iron supplement. Make sure you take the iron supplement at least a few hours away from your levothyroxine.
Your doctor is underperforming, so you need to take control. Hence my recommendation you have support from a relative or friend. Doctors can be offhand with females, especially younger ones.
Thank you, I am meant to be on ferrous fumarate but due to an iron infusion my haematologist stopped my iron. Since then my iron has been dropping from triple figures into double figures over the past year. I will go back to my GP and insist on the correct treatment.
Try taking a ball pein hammer to your next appointment and put it on the doctors desk when you walk in. I find by doing so it doesn't make the doctor a better doctor but it does focus their mind on your problem.
Thank you, have had to look up what a ball pein hammer is! I will insist on better treatment from the GP. She said she would need to look at my ferritin and complete blood count levels before doing anything about my treatment for iron. But my MCV is below range and my MCHC above range! How much more proof does she need? They are definitely letting me down, I can't let this carry on for much longer.
Leanna, you got to put pressure on them, take someone with you who is forceful, or try collapsing on the floor or do some thing, start thinking outside the box. A doctor not being able to help is one thing but one who is not willing to help is another.
You got to get the message across to them and you got to think of any means of doing so. If they have the ability to treat then that's what they should be doing.
Hi Leanna- u mention Mcv and MCHC - seems more like a b12 deficiency anaemia than iron?
Folate iron and b12 all interacts together so maybe ask GP to specifically test b12 also.
If you post your results on the pernicious anaemia group they are often well versed in deciphering the problem and recommendations too. Have found both these pages really helpful
It's a hammer with a rounded head with a flat face (the main business end), and a round heel (not a claw) - used for bashing metal (and, evidently, recalcitrant endos/GPs)
At least you need Vit D, B12, folate and ferritin tested as well as your thyroid meds. For yourcthyroid to work properly that the four I mentioned need to be optimal, not just in range so any results let us know and what your doctor is doing about them-they often get that wrong as well!
Leanna1, you are being horribly let down by your doctor I really hope you are getting treatment for all these out of range nutrients! Please tell us what treatment it is, as sometimes it's very inadequate.
Your thyroid hormone is far far too low. Ideally you want your freeT3 in the top third of the range. Although doctors will pay more attention to the TSH - that should be 1-ish or below.
I agree with others that you need to be very assertive. And perhaps shop around for GPs at your practice and see if you can find one that's less of an idiot
You have to take your own health into your own hands and in a very short time we know far more than most endocrinologists and doctors who appear to only take notice of the blood test results and not the clinical symptoms.
The point of taking thyroid hormones is to relieve all clinical symptoms.
All tests for thyroid hormones have to be at the very earliest possible, fasting and allow a gap of 24 hours between last dose of levothyroxine and the test and take afterwards.
You also need B12, Vit D, iron, ferritin and folate tested - all have to be optimal - not just somewhere in the range.
Was your test taken first thing, fasting (you can drink water) and a gap of 24 hours between last dose of levo and the test? If not your results will be skewed.
Many other people have posted that magnesium oxide affects the gut negatively more than any other form. Indeed, it is often derided as being cheap version that makers of poor quality products use.
You are extremely under medicated. On Levothyroxine dose should be increased in 25mcg steps until TSH is just under one and FT4 towards top of range and FT3 at least half way in range
Bloods should be retested 6-8 weeks after each dose increase.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Presumably you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies?
Extremely likely to have very low vitamin levels
For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested
See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels stop Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
GP is incompetent and you should inform your endocrinologist of what has happened and give them new blood test results as soon as you get them. They are almost certainly going to be terrible
Oh dear, this is awful. I would find a way of contacting your endo in the next few days (leave urgent telephone message?) and ask their advice. Based on your blood test result when it was reduce a reduction from 175 to 150 might have been appropriate. In the meantime I would resume at 150 dose if you have sufficient levothyroxine, taking 300 mcg for about three days to speed up your recovery.
The 175 to 25 mcg reduction was stupid. Your GP has no understanding of thyriod, maybe there is another GP in the practice you can see, or get the endo to give blunt instructions.
1) You should never either decrease, nor increase, dose of Levothyroxine by more than 25mcg at a time. With 6 weeks between retesting and new 25mcg change ( at the very least 3 to 4 weeks).
You were undermedicated when on 175mcg in October. Are you sure there hasn't been a misundetstanding? Especially if your GP practice is fond of "telephone consultations".
Could GP have actually said take 25mcg more? And not 25mcg instead?
As the correct action would have been an increase BY 25mcg to a dose of 200mcg Levothyroxine. AND by now, you should gave been retested and possibly further INCREASED by another 25mcg to 225mcg.
How can a number larger than the top of the range show negative - is the GP thick or what? 607 is bigger than 34, therefore POSITIVE etc. And 25 mcg is a low starter dose for a frail elderly person or one with heart disease, not the correct starter dose for a "regular" adult.
OK, I searched and found his website (not facebook).
He emphatically recommends taking magnesium every day:
Magnesium Supplements – Take a bio-available Magnesium supplement every day.
Two brands that I confidently recommend are Jigsaw Magnesium w/SRT (time release) and Magnesium Glycinate by Pure Encapsulations or Magnesium glycinate by Corganic
Two of the three products he recommends are magnesium glycinate, the other, the one he especially favours, is dimagnesium malate. The company's site says:
Why Jigsaw Magnesium w/SRT®?
Not all magnesium supplements are created equal. There are many different forms of magnesium, each with a varying degree of absorbability and side-effects. For optimal health, many doctors recommend a daily intake of at least 500 milligrams of magnesium.
Cheaper forms of magnesium such as Oxide and Chloride — which are found at most grocery stores, drug stores and health food stores — make it very difficult to take a full 500mg's (let alone 1000mg's) without the terrible side-effect of diarrhea. And let's face it, diarrhea can be a strong deterrent to even the most important of recommendations.
Leanna, Sorry to hear of your situation - and you have a lot going on , to deal with, with both parents also.
Did your Endocrinologist check your Adrenals back in 2011 before you started your Levothyroxine? Were they OK?
I would also ask for blood tests for Vitamin D, Calcium, B12, Folate if they haven't been done. For example - bone pain is a symptom of Vitamin D deficiency. With IBS you could have Diverticular disease and this means you most likely have malabsorption.
Also I would contact Haematology and ask what's next step with iron levels.
Were you told you have Hashimoto's Autoimmune Thyroiditis? Did you have Thyroid Antibodies TPO & Tg tested as well as the Ultrasound scan?
About your Mum, is she also on Levothyroxine? Was she ever tested ? Thyroid Antibodies? Thyroid Function tests?
Finally, is there any reason you can't take the Levothyroxine early morning?
Hope you get fully investigeted and the correct dose of Levothyroxine and presribed supplements needed very soon. All you can do apart from this is eat a very healthy high fibre diet and drink lots of water. Cutting down on bread (especially white ) ; avoid cheese, eggs, marshmallows, broad beans, gassy veg eg cauliflower, cabbage; caffeine, fizzy drinks.
Never had adrenals checked, vit D ferritin folate all below range. High antibodies checked same time as ultrasound which showed thyroid enlarged and damaged. Mum is hypothyroid but not on medication. I can take levo early morning
VitD , Ferritin, Folate (B9) and B12 actual results please - ALL numbets - result ; range in brackets any comments & dates of tests + details of any supplements presrcribed Please!
Magnesium citrate is a good well absorbed form of magnesium but it does seem more potent, if you take too much you will get diarrhoea, as with all forms of magnesium. Other forms such as chelated or glycinate are also good. The worst is magnesium oxide as very little is absorbed. Magnesium hydroxyide is a bit better but also poorly absorbed, not good enough for magnesium supplementation but a good antacid (in Milk of Magnesia - no longer marketed?).
If you drink bottled water read the label and look for the ones with higher magenesium content, they not only taste better but are an effective form of supplementation.
Your have very poor conversion so your FT4 was slightly high but your FT3 is LOW
If dose needed adjusting (which it didn't) then a tiny adjustment of 12.5mcg or max 25mcg is all that should happen
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Is this how you did the test?
Poor conversion almost certainly due to terrible vitamins
When vitamin D, folate, ferritin or B12 are too low thyroud hormones can not work
See Box 1. Towards end of article
Some possible causes of persistent symptoms in euthyroid patients on L-T4
You will see low vitamin D, folate, ferritin and B12 listed
Strongly suspect you are either Coeliac or gluten intolerant
A very high percentage of us with Hashimoto's have to be strictly gluten free. But get coeliac blood test first, before changing
Make urgent appointment with different GP for Tuesday and get thyroid & vitamins blood tested, plus coeliac
Does your endocrinologist know that GP has interfered? Endocrinologist is the expert, not the GP
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne: tukadmin@thyroiduk.org
Once you get Levo dose up, vitamins improved and on strictly gluten free diet, if FT3 remains low then can look at adding small dose of T3, but the other steps must be done first.
Prof Toft - article just published now saying T3 is likely essential for many
Leanna1, these results are quite different from the ones in the original post. Are both sets on 175mcg of Levothyroxine? What's the date on these ones?
Okay, this is a bit different from what I thought.
When you were on 175mcg it's clear that you were a poor converter. Levothyroxine is made of T4, this is a storage form, and in your body it has to be converted into T3. This is the active hormone that is needed by every cell in your body.
Sometimes our bodies struggle to do that conversion. Low vitamins and minerals is one of the things that causes this.
So on 175 your freeT4 was a tiny bit high, but your freeT3 was very low. Ideally you want it to be in the top third. When taking Levothyroxine only its common to need a very high freeT4 in order to get a good freeT3.
The second result is not really valid, because you haven't been on the same dose for 6 weeks. It takes the body a long time to settle on a new dose. So it looks very bad, but it's probably going to be a lot worse by now if you're still on 25mcg.
No idea what your doctor was thinking to do such a terrible thing! But I'm sure they're waiting for you to come back and complain bitterly before they do anything.
These numbers make sense. In Sep you were on a little too much levothyroxine, a reduction to 150 mcg would have been sufficient. If you still had symptoms then it would make sense to include some liothyronine (L-T3) rather than increase the levothyroxine.
An ft3 of 4.6 with fT4 23.7 is perfectly normal, although some patients require additional L-T3 for various reasons. These numbers do not suggest impaired deiodinase (T4 to T3 conversion). If you increase your levothyroxine beyond 175 mcg your fT3 would go up but this is a consequence of a shift from type-2 (D2) to type-1 (D1) deiodinase. This gets too technical, but in simple terms it is not good and will not help with hypo symptoms.
For most patients the 'ideal' numbers are average fT3 and fT4, which is where the general population is. However, some patients, those who are not doing well need higher fT3 levels for various reasons. It is wrong to target high fT3, high fT4 since this will only apply to a minority. Some do need high fT3 but this should be done only if they are still hypo with normal hormone levels.
How were you when you were taking 175 mcg levothyroxine?
GP mentioned treatment with T3 but he said he wasn't authorised to prescribe. He told me he would prescribe for me if he could. Mum says she feels well enough without levo
" My Mum has a progressive illness and doesn't have many years left (she is 51); . ."
from your last reply -
" Mum says she feels well enough without Levo " ??
ALSO -
Are you only on 25mcg Levo now?
How is that going to help? Will only make things worse.
Ask your GP what he plans to do to protect your Pituitary Gland.
Because this is another reason we need adequate LT4, Levothyroxine , and (in your case it seems) T3 , in ordet to protect the Pituitary Gland from over-working by producing too much TSH.
Or better still - see the Practice Manager or another GP at the practice. Or phone your Endocrinologist's secretary tomorrow and say you need to be seen urgently. Or have a telephone conversation with him/her.
You need to get your Vitamin results in full with normal ranges. For example your Vitamin D level - what is it ? What is your deficiency?
Is it - Insufficiency or deficiency or severe deficiency?
The treatment for Insufficiency is daily maintenace dose of 800 IU or 1000 to 2000 IU according to NICE guidliness. It depends on the individual's need, symptoms/conditions. However the treatment of Vitamin D deficiency is prescribed Loading Doses of 280,000 IU to 300,000 IU to be taken in split doses over several weeks. Referal to a Specilist may be indicated . Google search this for full information.
Ask a diffetent GP to address all your deficiencies and check your Adrenals.
Ask fof appropriate Specialist Referals. URGENT.
Ask your Mum to seek urgent help from an Endocrinologi or go with her to see her GP.
You have so much on your plate. First, congratulations on your coming wedding.
Yes, I have hypothyroid and I have had many of your symptoms. The depression, dry skin, the heavy periods, exhaustion-- most of the symptoms are controlled by thyroid med. Endocronologists/rheumatologists are drs to see for thyroid issues.
And yes, wheat and other gluten containing foods are out of my diet. That can cause bloating and othr digestive issues. Celiac Disease can cause that. Gluten Free, little to no dairy, little to no meat-- eat orgaic if u can.
U might get 2 responses from me, error in sending.
First, congratulations on your upcoming marriage.
Yes, I've had many of your symptoms. Digestive problems- bloating etc- can b caused by gluten containing products-- wheat, etc. So gluten free, low or no dairy, little or no meat, lots of fruit, veggies and water. Organic if u can.
Very interested to read your note avoiding Magnesium Citrate.
I joined Thyroid UK and Health Unchecked in the last 4 weeks and have found it very informative..
Received numerous links on vitamins and minerals one of which was on various forms of magnesium to take and not to take .Magnesium Citrate was highly recommended . I bought Solgar which is a good brand but I found that the tablets seemed to aggravate my condition of Hashimotos. Which brand are you using ?
You have still not backed up your claim that magnesium oxide is a good form of magnesium. In my limited understanding, I fully agree with jimh111 further down this post:
The worst is magnesium oxide as very little is absorbed.
I think the confusion comes from trusting statements from web authors who are not reputable. I haven't tried glycinate but I don't doubt it is good. Magnesium supplements basically come in two forms: either they are well absorbed and magnesium ions enter the bloodstream or they are poorly absorbed and more likely to produce diarrhoea.
Once magensiuim ions are in the blood the elemental magnesium (Mg++) is the same, no matter where it came from. Thus, I would ignore any 'expert' who says one form is better for the heart and another better for bones or whatever. it just doesn't make sense. Whilst different magnesium salts may have stronger bonds and be more reluctant to release the magnesium I can't see that this would be organ specific.
Morley Robbins appears to sell things - consultations, blood tests (not clear whether he makes anything from them - or not - but one is even called the "Morley Robbins Group Magnesium Profile"), and Hair Tissue Mineral Analysis.
I'm unable to find any link on PubMed. I guess it's possible that the other half of the molecule, the citrate, has effects. e.g. if you were hypothetically to take salt (NaCl) to boost your Cl levels (can't imagine why) then you would unintentionally boost your Na levels which may not be desirable.
However, I suspect someone has seen a link between citrate and jumped to the conclusion magnesium citrate would affect bone formation whereas other forms would not. They would need to quantify the effects or carry out a study with a control group on a different form of magnesium. Alternative physicians have a tendency to see a substance has an effect and then jump to the conclusion that moderate amounts will have a pathogenic effect.
There are a number of good forms of magnesium so if you have doubts about one form you can always choose another. Given I drink about half a litre of orange juice a day I'm not going to worry about the citrate in my magnesium tablets!
Leanna It sounds like a B12 problem to me. I can relate with your symptoms. I am wondering if you get your B12 upto the 1000 mark whether you would need to keep upping your thyroid dose, the 2 sort of go hand in hand. xX
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I really hope you are getting treatment for all these out of range nutrients! Please tell us what treatment it is, as sometimes it's very inadequate. 
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