I wonder if you can help me with my first post. My 21 year old daughter was diagnosed with hypothyroidism age 8 & prescribed levo which she took for many years. She took herself off levo abt 2 years ago as she thought it was contributing to her severe anxiety after a 2 month break from it following an illness. She has had a couple of subsequent blood tests within thr last 2 years & TSH is "within range" at 1.44. Her GP said it's fine for her to stop the levo.
Over a year ago she developed severe acne for which she is taking roaccutane which has virtually had no effect. Her mental health regarding this has made her suicidal st times. She is about to start her final year at uni training to be a radiographer & due to go on placement in hospital next week. She has now had to give up her final year as she would have to wear a mask all day every day due to covid. she cant do it because her skin is so bad & has weeping spots all over so I can understand her worry. She is devastated as we all are as she was fulfilling her dream.
My question is - would it be a good idea to have a full panel thyroid test as I understand thyroid troubles can cause acne? She has always followed a very healthy diet & although she is 21 she only started her periods 2 months ago.
Sorry to drone on - I'm just at my wits end & fear for her mental state.
Thank you so much in advance for any help.
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Irismay
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Yes, she should have a full thyroid function test incorporating at least a minimum of the following tests :
TSH
Free T4
Free T3
TPO Antibodies
TG Antibodies
Vitamin B12
Folate
Ferritin (iron stores)
Vitamin D
Hypothyroidism causes reduced stomach acid in most sufferers. With low stomach acid the body can't extract nutrients from food very easily and so low levels and deficiencies of nutrients are extremely common. Fixing those low levels will help lots of problems - the symptoms of (for example) low iron can mimic the symptoms of hypothyroidism. Fixing nutrient deficiencies makes it easier to tolerate thyroid hormones.
Thank you for your reply & advice on the blood tests. That's interesting about the low stomach acid I have b12 deficiency & I made sure she was checked for that. It was ok at 484 ng/l (200.0 - 960.0 range). Her serum ferritin was 12ng/ml (15.0 - 350.0 range) so very low . So I was also very interested in your comment that low iron can mimic hypothyroidism. Her GP just told her to eat more dried apricots! Also I thought her serum folate was a little on the low side at 5.7 but still within range.
As regards her diet, she eats a varied range of food, plenty of fresh veg & a little fruit - I say a little fruit because what she is cautious about eating is sugar & also dairy. Replacing dairy with dairy free milks (but not soya), dairy free butters, coconut oil. This relates to her trying not to flare her acne. She is also gluten free.
Thank you for taking time to reply it is much appreciated.
No, that is not OK. It should be at least over 550, but as she (probably) has Hashi's, it should be nearer the top of the range.
I started having severe acne at the age of about 48 (very embarrassing!). I didn't have it as a teenager and thought I'd got away with it. At 55, I was diagnosed with Hahsi's/hypo and started taking levo. Not much good came out of levo, as far as I was concerned by my acne cleared up pretty quickly! Whereas frequant visits to dermatologists and all sorts of treatments had done nothing for it.
If she was diagnosed hypo at 8, and then came off levo with no ill effects, it's perfectly possible that she does have Hashi's. Do you know if she ever had antibodies tested? With Hashi's you can have swings from 'hyper' to hypo, to 'hyper' again, then back to hypo, getting more and more hypo all the time as the thyroid is destroyed. But, in between a 'hyper' swing and going back to hypo, you can have periods of euthyroidism - quite long, sometimes - so it's perfectly possible that that is what happened to her. To be sure, you do need all those tests done that humanbean mentioned, but particularly the antibodies. However, you should be aware the antibody tests can prove a positive, but can't prove a negative, because antibodies fluctuate. A negative test needs to be repeated at least three times.
Thats really helpful advice thank you very much. I will get the tests done - I just have a gut feeling it is related to the thyroid. I'm a bit worried that if anything does crop up her GP wont even look at them if I have them done privately.
That is always a possibility, yes. But, at least you will know. And, if there are nuritional deficiencies, you could always treat them yourelf. You don't necessarily need a doctor for that.
No need to worry about what the GP says as few know very much as they seem not to have had much training with regard to thyroid hormones. Very often when some members post on this forum the advice from the GP is poor or very poor.
Yes I agree. You would have thought more research & teaching into thyroid issues would be beneficial to so many & avoid so much suffering and save money & useless investigations in the long run. I have found the same thing with b12 deficiency. It is the cause of so many health problems yet is largely ignored.
Yes, I agree and I also have pernicious anaemi as did my mother. My mother died prematurely as her doctor told her she no longer needed B12 as her bloods were fine.
Both my sister and I thought this was good believing that doctors knew what they were going, but this proved to be wrong and my mother died with stomach cancer due to the doctor's decision.
Oh I'm so sorry for the loss of your mother, . Some Drs think that once your b12 level is up to the correct level you can stop the b12 but the injections are for life. During covid so many GP practices have decided to stop all b12 injections & swap to tablets which is so dangerous. The Pernicious Anemia Society are excellent at supporting people in this predicament. I dont understand why people have to fight so hard when the evidence is clear.
About your daughter's skin, I remember when I was around 12 years of age I got boils and styes and acne for about three or four years.
At times my eyelids were so painful I couldn't open my eyes and there wasn't much medical help.
I really understand about your daughter. As I was younger than your daughter I probably wasn't aware of how bad I looked. Eventually everything did disappear and I've been o.k. for years.
There are many people in the world who have had deformed faces but they still have to live somehow..
This young woman was able with help to restore her damaged face - eventually.
I hope your daughter can put her career to the forefront and be a radiographer so she can also help to restore the health of patients and her esteem will be raised a lot.
Hi again ' I just read your post on face shields. Katy has asked occupational health if she could just wear a shield which she could definitely cope with but NHS state aface shield is not satisfactory protection on it's own & must be worn with masks.
Maybe some other solution will arise - I will update you if it does.
This is a link which might be helpful and informative:
"The Centers for Disease Control and Prevention continues to recommend wearing “cloth face coverings in public settings where other social distancing measures are difficult to maintain.”
But some health experts say shields appear to be very effective at preventing infection — maybe even more effective than masks — for someone going about regular daily activities and not in a high-risk health care setting.
For the latest coronavirus news and advice go to AARP.org/coronavirus.
Amesh Adalja, M.D., a pandemic preparedness expert at the Johns Hopkins Center for Health Security, says, “There's a lot of at least biological possibility to suspect that [shields] are definitely better than homemade face masks, and maybe even better than other types of masks as well, because they not only prevent you from spreading it … [and] because it also covers your eyes, it provides more protection to the mucus membranes of your face where you might be getting infected.”
James Cherry, M.D., a distinguished research professor and infectious disease expert at the David Geffen School of Medicine at UCLA, says that while experts aren't yet sure about how vulnerable our eyes are to infection from this coronavirus, “With many viruses, the eyes are important.” He points to measles and adenoviruses as examples of viruses that are known to infect people through their eyes.
DIY face shield tips
There are many online videos showing how to make your own shield in a few minutes, with different variations: a Canadian DIYer uses plastic binding covers you find at office supply stores; others use plastic bottles. (Note that these are not medical-grade or approved by any official health agency.)
Another benefit, says Adalja: With a mask, you may find yourself constantly adjusting it and therefore touching your face and possibly transferring the virus from your hands, but wearing a shield “doesn't really put you in a position where you're touching your face so much, because it's not as cumbersome to wear."
And finally, Adalja adds, “If you walk down the sidewalk, you can find lots of masks that are just discarded there, which are an infection control risk for other people. Whereas a face shield is something that people can just clean themselves and reuse."
A recent opinion piece in JAMA by Eli Perencevich, M.D., a professor of internal medicine and epidemiology at the University of Iowa Carver College of Medicine, and two of his colleagues pointed to such benefits of shields for infection prevention, and noted that “face shields appear to significantly reduce the amount of inhalation exposure to influenza virus, another droplet-spread respiratory virus. In a simulation study, face shields were shown to reduce immediate viral exposure by 96 percent when worn by a simulated health care worker within 18 inches of a cough.” In an April 19 tweet Perencevich wrote, “Biggest benefit of face shields would be inside crowded office situations where air exchanges aren't ideal."
Another benefit? With warmer weather, many may also find a face shield attached to a headband or cap cooler to wear than a cloth mask.
Regarding the ferritin result, I am shocked at what the doctor recommended. I think your daughter has excellent grounds for complaint. She could well be anaemic. And I expect her to be very, very fatigued by the low levels of iron and ferritin even if she isn't officially anaemic.
You can look up the iron content of dried apricots :
Dried apricots contain 2.6 milligrams of iron per 100 grams.
Just to give you a comparison using a personal anecdote...
I was desperately short of ferritin and had below range serum iron a few years ago. In order to raise my iron and ferritin I was prescribed the equivalent of 207mg of pure iron per day. I don't absorb iron well, and it took me nearly two years to raise my ferritin to optimal (mid-range). I took over testing and buying my own supplements after the first prescription.
I think your daughter needs to go back to her doctor (or another one in the same surgery) and demand treatment for iron deficiency and testing for anaemia. Anaemia is usually officially defined (by the World Health Organisation) as haemoglobin levels below 120 g/L or below 12 g/dL. NHS doctors usually appear to define anaemia as below range haemoglobin although I haven't got a link which confirms this. Haemoglobin is tested as part of a Full Blood Count.
Another problem with treating iron deficiency, with or without anaemia, is that doctors will often prescribe supplements for 2 - 3 months, then don't re-test or prescribe again.
As I mentioned earlier, when I took over my own testing and treatment it took me nearly two years to get my ferritin to mid-range. Despite that my serum iron is still low in range.
Obviously, a lot of people raise their iron more quickly than I do, so don't use my experience as a guide to what will happen to your daughter - proper and regular re-testing is key. I think I probably have genetic faults in the way my body absorbs iron.
If you want more advice on how to do an iron panel privately, or what supplements to buy (there are lots of different kinds available), or what dose to take etc, then I've written about iron and ferritin a lot, so you could have a poke around my replies to others with poor iron.
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I notice greygoose has replied about your B12 while I've been writing this post. I would agree with her about raising B12 to top of the range. In order for the body to make use of the B12 the body needs good supplies of folate too. If you start supplementing B12 and folate, you also need to take a good quality B Complex too. It is "normal" for people with thyroid problems to rattle with the enormous number of supplements they take to overcome the poor absorption of nutrients.
Please note that supplementing B12 can actually make acne worse, temporarily. But it is worth persevering because the end result is usually a vast improvement in the acne. I had ginormous spots from puberty until my 50s when I started taking high dose methylcobalamin (I was taking 5000mcg per day). The spots got worse, then got better than they had ever been since they first started as I approached puberty. Nowadays I almost never get spots at all and the small number I do get are tiny.
Please note that taking high dose B12 will raise levels well above the range. Vitamin B12 is not poisonous, so this shouldn't be a concern. I try to keep my folate levels at the top of the range, rather than go over the range for that.
When supplementing B Complex, most of them contain biotin. It is vitally important to stop taking the B Complex (or any other supplement containing biotin) for a week before getting any blood tests done. Some testing machines use biotin as part of their testing protocol, and if the sample they are testing contains lots of biotin then the results can be completely corrupted.
Thank you sooooo much. You have helped enormously with your detailed reply. We will sit down & digest everything mentioned . I am excited we have something to work with.
Hi Humanbean - may I just run one more thing past you? My daughters haemoglobin level is 33 mmol/mol. Would you know if this is within normal range or whether I should also mention this to the GP?! Thank you again for your help
I've never seen a level of Haemoglobin with those units of measurement before. Given the units and the result it looks more like the result of an HbA1c test, which is done to test for diabetes. (And a result of 33 is very good.)
The last Haemoglobin test I had was measured in g/L and the reference range was 120 - 150.
If you want to see what is tested in a Full Blood Count take a look at this link :
Thank you - yes it does say A1c in the results column. Further checking the haemoglobin level I think to which you refer is 126g/l which seems ok. I will check the website you gave me.
Thank you for giving up your time this Sunday- you have helped us very much.
Blood draw has always to be at the very earliest, fasting (she can drink water) and allow a gap of 24 hours between last dose of hormones and the test and take afterwards.
Her thyroid is probably OK but given her situation it would be worth double checking.
What sort of mask would she have to wear? If it were one of the light surgical masks would it be possible to change it e.g. every hour? This would be a reasonable accomodation for the hospital to make (required under the Equalities Act).
I'm not sure of the type of surgical mask she would have to wear. We have some surgical masks at home which she has trialled at home. It seems to be the friction from the mask that causes the soreness & irritation on her face despite frequently changing it. The Roaccutane she takes also has made her skin extremely sensitive. Its typical but her acne is mainly cystic all over her cheeks exactly where the mask sits she was on placement earlier this year & that's when the worst flare happened after she had been in theatre all day. Its never really calmed down since then. So whether it was a coincidence I dont know but now in her way of thinking feels having to wear a mask all day every day for 4 months is going to be intolerable. She has been assessed by occupational health & they have given permission for her to interrupt her studies for a year - I just hope we can find the answer in that time & that we wont still be wearing masks then either!
Roaccutane is well known to cause mental health and suicidal issues so if it's not helping her maybe best to stop taking it. One of my daughters was offered it but due to the serious side effects it can cause I decided against it.
She had great success using DMK products at a specialist clinic, took a couple of years and cost £££££s but it was worth it.
Thank you for that info about DMK - I have never heard of it - I will do some research later & I'm so pleased it worked for your daughter.
I am extremely worried about the side effects of roaccutane but my daughter will literally try anything even if it puts her health at risk. She even considered chemically burning her face off! We have tried many methods of helping her over the time she has had acne & literally chucked £££ at it before resorting to this awful drug. It's not even working for her but she wont come off it because shes afraid her acne will become even worse. She is on her final month of the course & it gives her panic attacks just thinking about finishing it.
Would your daughter wear one of the plastic face shields?
Can she reinstate her withdrawal?
She may be embarrassed because she is older and her skin is bad but some who are born with some terrible facial deformaties have to go through life and I know some people who are disabled through some cause but have found 'bravado' and have a life - even although some people look at them more than once as they pass by. Burns especially cause lots of damage.
The face-guard shouldn't hurt her skin which should begin to heal naturally.
I also when very young had boils and spots develop on my face. I may not have felt very good and of course, if we're younger, we seem to accept things more bravely.
This young woman pictured recovered her life but your daughter's phase should gradually improve, so she has to put her future before everything. She will still be loved by her family regardless.
Thank you shaws. My daughter Katy admires Katie Piper very much. We would so wish our Katy to be as strong as her & many a time we have referred to her story & indeed many other wonderfully brave people overcoming adversity to try & persuade her to think about things. Unfortunately she has a long history of OCD & related health issues. I think it stems from when she became very ill when she was 5 & spent a lot of time in & out of hospital for many years. This has led to disfigurement of her neck but she is proud of her scars! We feel proud that she has come this far as she missed so much school but therrs no doubt wed like to push her to get on with it, especially her father! It didnt help when her dermatologist said hed never seen such a bad case of acne on a young lady in front of a room full of medical students, some of whom she knew!
We'll keep subtly pushing her in the right direction but I fear her mind is set.
Thank you taking time out on a sunday to make such an interesting reply
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Thank you very much for taking time out to reply, it is very much appreciated. I will definitely be getting her bloods done as suggested. I was wondering if this is a pinprick test or whether blood had to be drawn via a vein? Any advice on how I could get this done if by vein - would I have to find a private Dr? Thank you for your help.
All these companies usually offer options on private Blood draw (for small extra fee) at local to you clinic....or (more expensive) private nurse to your home
Wether private clinics are open yet .......go on the websites and check them out
Personally I think the nurse option is very expensive....and important to do test as early as possible in morning (Pre 9am) before eating or drinking anything other than water....so if booking nurse you need to underline that test after 9am in morning is too late
With Ferritin BELOW range insist GP does full iron panel test for anaemia
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Low vitamin levels tend to lower a TSH ...
And the longer someone with hypothyroidism is untreated the lower vitamin levels drop and the lower TSH can drop....hence the reason why just testing TSH is completely inadequate
Hi had really bad acne boils and I used acnecide Which got rid of all the acne. I got the acne when I started began with my hypothyroidism hashi it may be worth a try a lumie light box I bought one from boots which helped .
Thank you for taking your time to reply it is much appreciated. Katy has tried acnecide but not a light box. I will look into this, I've no doubt she will want to try it!
I can empathise with your daughter. I had bad acne for nearly 30 years before being diagnosed with hypothyroidism and having NDT.
It was awful; it started at age 18 and continued until I was in my late 40s. I had huge cysts on my face which would distort my features; they were very painful and disfiguring. I had all sorts of medication and creams (Roacutane did work for me, for a short time) but I now realise that this was a symptom of hypothyroidism and I needed thyroid hormones. Acne does nothing for ones confidence. I am now starting to show the scars from acne on my face and I’m in my 60s.
I’ve not read through all the replies but it does sound as if your daughter should not have stopped her thyroid medication.
Thank you so much for your reply. I'm so sorry you went through hell with your skin & you are so right it does terrible things to tour confidence & mental health. I have had so.e wonderful advice on this forum & I am in the process of digesting everything & arranging some blood tests. May I ask if you take levothyroxine & any other supplements you would recommend? Thank you again for taking your time to reply.
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